(1 week, 1 day ago)
Public Bill CommitteesBefore calling the first Member, I remind all colleagues that questions should be limited to matters within scope of the Bill. We have to stick to the timings set out in the programme motion. The first session will finish at 12.30 pm, so can we stick to the points and keep them as short as possible, please? Members who wish to ask a question have indicated that, and I will call them in no particular order. I will start with Simon Opher.
Q
Dr Furst: The medications are completely effective. I have not experienced any failures. One of the things I feel quite comfortable reassuring my patients and their families is that this medication absolutely works.
In terms of oral administration—the default option in South Australia unless the patient cannot consume the medication or has problems with absorption—it puts them to sleep within a couple of minutes. They are heavily sedated, as if undergoing an anaesthetic, and then death ensures—that is, the heart stops and respiration stops. For about 95% of patients, that happens within about half an hour. There is a small, small percentage of patients who will continue to be sedated but circulation will not cease for some hours after that. We warn patients and, more importantly, their families that this may be the case, and that is an enzymatic issue.
The medication it is highly effective. Personally, I have not had any experience where patients have had complications—vomiting, respiratory distress or any other concerns. Certainly in South Australia, those have not been issues that have been reported to us. I think there have been a couple of cases of vomiting elsewhere, but the medication has worked in all cases, as far as I am aware, around Australia as well, so this has not been an issue.
IV administration is also highly effective. By the time the medication has been administered completely, the patient is deceased.
This works—it is peaceful. Patients say to me, “I want to go to sleep and not wake up,” and that is absolutely what happens. It is a very peaceful death.
Q
Dr Furst: There have been no failures of treatment in South Australia, as far as I am aware. I am not aware of any other particular ones around the country that have been heavily broadcast to us.
Q
Dr Furst: Every legislation within Australia is slightly different. For South Australia and Victoria, you are correct—well, there is pretty much no obligation all around Australia for a doctor to be present for self-administration. The reason for that is to give individuals autonomy over their death, and over the time and place of their choosing. We in South Australia do touch base with what we call the individual’s contact person to understand if there have been any complications and to check in after the death. A large number of our patients, though, will seek out support from a voluntary assisted dying nurse navigator, who is often present in the house just as a support person. We do also have a lot of feedback from them as to any complications, but the doctor often, or a nurse, will come at a later time to declare life extinct.
The reasoning was that we did not think that there would be complications and we wanted to give people autonomy. We work on a permit system in a lot of jurisdictions in Australia, so people have a permit; they get given their substance and they can take their substance at a time of their choosing. They might have the substance in their house for weeks or months, potentially. Again, there is no obligation to follow through with taking that substance, which we also think is quite important. We know that in Australia, about 30% of patients who have a permit or who are approved for voluntary assisted dying actually decide that they do not want to consume the substance, but it is about giving them that choice and autonomy, and the strength to maybe pursue other lines of therapy.
(1 week, 1 day ago)
Public Bill CommitteesQ
Professor Hoyano: I have to say that I have real concerns, as a practising barrister, about how the provisions as currently drafted could work in terms of judicial oversight. There are a number of unusual functions, if I can express it that way, being attributed to the court. I need first of all to stress that the High Court’s family division, and the Court of Protection, regularly engage with life and death matters, but they are doing so in the context of an adversarial and not an inquisitorial system. However, since the 19th century we have had the invaluable institution of the Official Solicitor, who has investigatory powers or functions and who serves in court as an amicus curiae—a friend of the court—to assist the court in understanding where the issues lie and in calling witnesses. I do not think that it is feasible at all, in our current system, to have the court call witnesses or question them directly until they have been examined and cross-examined, if appropriate; the court can then put in questions and ask for clarification, as would happen normally now.
If we are to have a judicial oversight function as opposed to a panel of experts—to be honest, I think we already have the panel of experts: the doctors who are already involved in the different stages leading up to the final stage—the easiest approach would be for the investigatory function to be assigned to the office of the Official Solicitor, preferably with an individual who has expertise in this field and will be able to get experience by dealing with these cases. I point out that Lord Justice Munby himself—Sir James Munby, as he now is—represented the Official Solicitor in the seminal case on termination of life support, the Tony Bland case. We have a lot of experience in that area, in dealing with end-of-life decision making with the Official Solicitor, but I think that that role needs to be built into the legislation with very specific tasks set out, including an investigatory function.
The other current difficulty is that it is not clear at all what the procedure would be. With great respect to the drafters of the Bill, I have never before seen such a delegation of the most essential procedural structures entirely to rules of court in terms of practice directions or rules of practice; we do not do it in the family division and we do not do it in the Court of Protection. Exactly what has to happen needs to be set out.
It strikes me that the intention may be for the court to, in effect, certify that all the procedures have been correctly followed at the preliminary stages. What is not entirely clear is whether the court itself is required to investigate whether the criteria are satisfied. It reads like that, but I am not sure whether it is supposed to be a review function or a primary decision-making function.
This becomes even more difficult because of the way in which the Court of Appeal’s functions are ascribed. The Court of Appeal does not have power to summon witnesses; the Court of Appeal does not have power to question witnesses. In the criminal division, which is where I am primarily practising now, the court can hear expert evidence de bene esse in order to determine whether it should send a case back for a retrial on the basis of newly discovered evidence that was not originally available, but that evidence will be called by the defence. The defence will be putting the evidence in, the Crown will cross-examine and the court will ask any additional questions it wants to, but to have an original jurisdiction —in effect, what we call a trial de novo: a trial all over again—in the Court of Appeal is wholly inappropriate to an appellate jurisdiction. That needs to be completely rethought.
There is also a difficulty in that the right to appeal is very lopsided: only a patient can appeal a denial, not anyone else. If anyone has concerns about the probity and thoroughness of the preliminary stages, or thinks that the High Court judge sitting in the Court of Protection has made an error of law or has failed to follow the procedures, that needs to be reviewed by the Court of Appeal. We need an even-handed approach.
I can understand the motivation of not wanting busybody people, as happened in one case in Canada in which a wife had a religious objection to assisted dying, and yet there was no doubt that the husband had satisfied all the criteria. She went all the way to the Nova Scotia Court of Appeal because of her religious objections; it turned out that religion was a source of great dissension in the marriage anyway, but her church was egging her on. I know that you do not want that kind of situation, but I believe that this legislation has to be completely even-handed for it to work and for the system to acquire public respect.
Q
Dr Ward: Which clause are we looking at?
Now you’re asking. Let me check.
Dr Ward: In the interests of time, let me say that I moved to Queensland a year and a half ago, as I mentioned at the beginning, and took up an academic fellowship at the Australian Centre for Health Law Research. That university was tasked by the Government states of Victoria, Western Australia and Queensland with developing the training for assisted dying implementation there. The modules in that training very specifically go through coercion, how you detect coercion, how you discuss it with patients and cultural considerations around it. They cover everything from capacity to the administration of drugs. They are very robust training modules that healthcare practitioners must satisfy at a pass rate of 90%. We rely heavily on the training to make sure that coercion protection is in place.
It was clause 26, sorry.
Professor Hoyano: Under the Canadian system, the provinces each have a college of physicians and surgeons. However, what has happened is that everyone has worked collaboratively across all 12 jurisdictions, plus the federal Government. We now have the Canadian MAiD—medical assistance in dying—curriculum, which was developed by the Canadian Association of MAiD Assessors and Providers in consultation with experts from across the country. It is providing a comprehensive, bilingual, nationally accredited training programme that is evidence-based and is based on the learning that has happened in Canada since the legislation was first enacted.
There is also a model practice standard for MAiD and a companion document, “Advice to the Profession”, which all the medical colleges have signed up to. It helps practitioners to align their practice with the official guidance and assists health professional regulatory authorities to ensure that the public is protected. Coercion lies at the heart of these documents.
The regulations for the monitoring of medical assistance in dying require—and this is something else that I suggest be changed—that in Canada there has to be an annual report from the federal Government, which is very granular in detail, from right across the country. It happens at least once a year; there was one year in which we had two reports going into all the details. On coercion, we know that in 2023, when they examined the reasons for ineligibility, there were 41 cases across the country in which the physicians determined that the person had not made a voluntary request without external pressure, and it was therefore declined. We need to know is what is happening out there, and I do not think that a report every five years is going to help. We need to enlist all the medical professions involved in signing up to very detailed codes of practice, but we also need the training that Amanda has referred to as essential.
The last point that I would make is that McGill University is launching a national palliative care hub that is available to any practitioner in the country and from which they can receive guidance and support with helping and advising patients who are receiving palliative care. One of the options is, if the patient desires it, how to deal with these requests.
Dr Ward: Now that I have had a look at clause 26, may I answer the Member’s question? I think it is a very well drafted provision, and it is very similar to what we have in Scotland. In particular, I know we are concerned about people being coerced into assisted dying, but internationally it is actually the converse. Some jurisdictions are considering putting provisions in their Bill because family members are trying to put undue pressure on others not to make an assisted dying decision.
On my understanding of the reporting in Kim’s Bill, it is just not a five-year review: the Registrar General, the chief medical officer and the Secretary of State are involved. Again, I commend the Member in charge for the reporting procedures being very robust in the Bill.
Q
I notice that you have also spoken a lot about misinformation; how do we tackle that? How do we make sure we are dealing with facts rather than speculation? In particular, how do we provide reassurance to marginalised communities and people with disabilities, who are understandably nervous about this change in the law? When it comes to safeguards and protections, what does best practice look like?
Dr Ward: To take your last point first, we must involve them in the process and have an open dialogue with them. That means not just in the consultation process, when you are considering passing legislation, but when you have your implementation taskforce, on which you must make sure you have representation from across all the stakeholders involved, including people with disabilities and people with terminal illnesses.
I would point to the fact that best practice is about balancing the autonomy, dignity and compassion that the Bill aims to achieve by giving people the option of assisted dying, while also protecting vulnerable people who feel that there are worries and concerns. However, having worked in this area for 13 years and seen people who would really benefit from having this option, and living now in a jurisdiction that has it, I would point out that some of the most vulnerable people I have seen are the terminally ill who want and need this choice. It is about taking a holistic and evidenced-based approach.
You as a Committee will hear from the great and the good across the board, and I am pleased that the Committee is taking account of lived experience, because that is very important to inform the decision-making process. It is about making sure that we are going to the source of evidence and using peer-reviewed data and Government data. Again, as I said earlier, you really need to trust your international colleagues who have gone before you on this. We need to consider what the Bill does versus inaccurate perceptions of or speculations on what it might do. The task here is to consider what is in front of you, not what might happen down the road.
Q
Dr Ward: That picks up on the previous question, which my learned colleagues answered. Good legislation sets a baseline and a legal framework. You can take a kitchen sink approach to legislation, and you will end up with something that is completely unworkable in practice. There is an awful lot that guidance needs to pick up and should pick up. I understand that only certain things are appropriate for secondary legislation, but you should not try to legislate for every eventuality in a Bill.
On my reading of the Bill, there is nothing that prevents a multidisciplinary team from being involved with this. The Bill sets the baseline: there must be a minimum of two doctors. What happens in practice—and this should be picked up in guidance and secondary legislation—should be developed in conjunction with professional bodies: clinicians, allied health and social work. They are the appropriate people to develop that guidance, not legislators. I would say, “Be cautious about how much you put on the face of the Bill, because you might end up with something that is unworkable.”
If you have systems where assisted death is offered outside the healthcare setting, as in some of the countries around the world that you have mentioned, how does that limit people’s access to it? Do you think that has an impact?
Professor Preston: I think it almost enhances their access to it. At the moment, they get lost in the system. They are usually trying to find these two magical doctors—in a lot of countries, you still have to find those two doctors. Most doctors, even if they approve of the idea of assisted dying, do not want to be part of it. They might assess, but they might not prescribe. They might prescribe, but they would not administer. Trying to find those doctors to do it is really quite challenging. That is what we get back from the bereaved family interviews. How do you navigate a system where you cannot access the people you need to get to? People go doctor shopping—they are going to multiple doctors until they get the right answer.
If you keep it safer, outside of healthcare, people can talk to their doctor—they will mainly talk to their nurses, because they are the ones who do end-of-life care predominantly—and they can say, “Actually, that is not something we can do, but if you want to see, we have a stand with information about it. This is the service you can go through.” It is the same with the GP—things like that. I think it might actually make it easier for people to navigate. That is where I came to the idea of keeping it outside. It is a supportive way for patients and families because, on top of all this, they are dying. They are having a really difficult time and we are trying to get them to navigate services that are incredibly difficult when you are trying to find two doctors.
Just finally, on top of that, it is quite secret who does this. Doctors do not want to tell people. I have had people who do this—who might just assess and may not prescribe or administer—and they do not want people to know in palliative care because it does not go well for them. They are concerned that people will not like it. I do research in this area, and some people think that means that I am trying to push for assisted dying. I am not; I have a neutral stance. I will say things pro; I will say things against. But it is quite difficult for people involved. There is a bit of a taboo—there is a secrecy. It makes it even harder to say in the Bill, “Recommend another doctor.” It will be a challenge to find that person.
Dr Richards: May I add something? The evidence suggests that one of the implementation challenges with assisted dying is finding doctors willing to participate—consciously participate—in this practice. However, I think what you are asking there is about a more Swiss model of assisted dying. There is a reason that the Swiss model of assisted dying has stayed in Switzerland and gone nowhere else—it has not transferred or translated to other jurisdictions, because of its uniqueness and the practical challenges of disentangling it from a healthcare system.
It is important to recognise that, but we are also talking a little about disentangling assisted dying from palliative care. It is important to recognise that the majority of people who request assisted dying—who receive assisted dying—are within palliative care. They are already in that, as I am sure you have heard already. To disentangle assisted dying from the specialist communication around end of life would seem to be a self-inflicted problem of design, in my view, because it is safest being held there by the experts for those who want to get involved in it. It is safest being held in the healthcare system. As I say, there is a reason why the Swiss model is the only model where that happens outside a healthcare system. That is localised to Switzerland.
Q
Claire Williams: Again, those safeguards would need to be in place. There would be concerns if they were not actually giving the drug to the patient, and seeing the patient take the medication. Yes, robust safeguards would need to be in place.
Could you make it a supplementary? I want to get Kim Leadbeater in, and then we can come back to it.
Q
Dr Richards: In covid, we did research in care homes, and there was real concern about “do not resuscitate” orders and emergency care plans that were blanketed across the care homes. Care home staff were traumatised by that, so there are real issues. We know that there are real issues day to day in how people are treated within the NHS. I think it is unconscious—I do not think people are intending it—but we know that people are treated differently and that different things are done. That is partly why we think a system outside that would protect them, because then you are not within the healthcare team that is treating you and giving you advice about such things, whereas if you are having to opt into a system where you have to do something more, they will not feel like it. That does not happen in the hospital. It is about trust.
One of the issues in Switzerland—I must just add, the same Swiss system is being adopted in Germany and Austria, which already has a panel—is that they are trying to protect these people by keeping it one step removed, so that people do not feel that they are trying to be persuaded to an assisted death. Most hospitals in Switzerland will not allow assisted dying to occur, because they do not want a lack of trust in their patient group. Instead, they will sometimes allow the right-to-die associations in to do this and there are just a few hospitals that allow their staff to do it. It is all about trust.
Q
Dr Richards: It would have to be. Those examples that you have just given would not mean that it was not an explicit conversation.
And he was having excellent palliative care, so what was in his mind, do you think? Why did he decide on that option?
Liz Reed: He knew he was dying. He was diagnosed in October 2022. Just to be clear, in the period before his health started to really deteriorate, he had a great time. He went fishing, he went to the beach—it was like an advert for Australia, how great his time was. He quit his job, he was with his young sons, and he had a lovely time. But his treatment stopped working. He had had every treatment and, even though he was on the pathway and had started the voluntary assisted dying process, he was still having immunotherapy. He wanted to live. His family wanted him to live. But he got to the point where he knew he was absolutely not going to live, and that it was a matter of time. He said that he was afraid not of dying, but of dying in an awful way. He was worried his lungs were filling up with fluid. He thought he might have a heart attack. He was afraid of that happening; he was not afraid of dying. He was not depressed but he knew what was coming. He felt, in his own words, “I’m just sitting here waiting to die.”
He had had experience of a friend whose wife had died, and she got so bad that her young son could not visit her any more because it was too frightening for him. My brother’s children will remember who he was: this big, 6-foot-6, rugby-playing, fun dad. He got to choose: “Actually, I’m ill enough, I’m frightened of what might come down, which I know is going to happen anyway, and I choose now.”
Q
Liz and Julie, I am interested to know whether you think any aspects of the processes that you went through in Australia and in Spain could have been done better or improved. Is there anything from your experiences that we could learn from to enhance what we are trying to do here?
I also have a question for all three of you—and Pat, goodness me, to come here and tell your story after everything you have been through is unbelievably brave, so thank you. What impact did these different types of death have on your grief and on bereavement? We are talking about different types of death, so I think it will be helpful to think what that looks like for people.
Julie Thienpont: It is a very good question, because I think it did impact my grief. There is not anything that I would change, for definite, about that, but I think I mentioned that I had not tried to talk Guy out of it the first time around, but I did say, “Don’t be so hasty, because you’re not as sick as you could be.” He was still getting up and dressed every day and managing pain, so we had that discussion. On the only day that I ever knew him to stay in bed a little bit longer, I knew he was thinking about phoning to say that he was ready, and he called me to him and said, “Come and sit with me. I want to ask you two things.” The main one relevant to this is: “Don’t try and talk me out of it this time. I’ve made the decision. Don’t try and talk me out of it, because I don’t want you to be impacted in that way.” The second one was to “be strong”.
Both those things have impacted my grief, because I was so strong for 12 whole months and I just thought, “Yes, we’ve gone through that. It’s been great, and”—not “great”. Sorry, I am using the wrong terminology, but for me, it was so good to know that he died so peacefully and he was at peace with himself. That happened and I thought, “Right, now I’ve got to do the ‘be strong’ bit,” so I did that. I did want to talk him out of it again, but I did not, and I was very strong, and then all of a sudden, one day, grief did start to creep in, obviously. Suddenly I thought, “Hang on, he’s not coming back.” That is a normal grieving process, but it held off a little while.
The pathway that the grief I experienced took was that every day I had a different memory of us sitting somewhere, being somewhere or doing something. During the last months that we had together, knowing that he was going to die—sorry to sound like a bit of a romantic—our love intensified so much. You know that everything you do, it is probably going to be the last time you do it. It is almost like an unbreakable bond between you: you are both in this situation together and you are going to get through it, you are going to be strong, and you are going to be there for each other. I think that carried me so far, because those four months that he lived were the best four months, in the sense of our closeness and how supportive and caring we were for each other. It makes me smile now. When I think of his passing, I smile. Yes, I do get upset and I miss him a big lot, but I smile because everything worked out the way he wanted it to.
Q
Pat Malone: As I mentioned to Mr Kruger, I am loath to meddle in any way with the Bill. I think that as it is the Bill is the best we can do at this time.
Order. I am going to let you continue, but that question is out of scope. Is there anything else you want to say, Mr Malone?
Pat Malone: I have said that as far as meddling with the Bill is concerned, I would like to see it pass as it is without too much delay.
Q
Dr Price: If I take you to thinking about what an assessment of capacity would normally look like, if we think about clinical practice, a psychiatrist would normally get involved in an assessment of capacity if the decision maker was unclear about whether that person could make a decision. The psychiatrist’s role in that capacity assessment would be to look for the presence of mental disorder, and at whether mental disorder was likely to be impacting on that person’s decision making. They would advise the decision maker, and the decision maker would then have the clinical role of thinking about that information and assessing capacity with that in mind.
Psychiatrists sometimes assess capacity and make the determination, but it is usually about psychiatric intervention and issues that are within their area of clinical expertise, such as care and treatment, capacity assessment around the Mental Health Act 1983 and whether somebody is able to consent to their treatment. In the Bill, I am not absolutely clear whether the psychiatrist is considered to be a primary decision maker on whether somebody should be eligible based on capacity, or whether their role is to advise the decision maker, who would be the primary doctor or one of two doctors.
Should a psychiatrist be involved in every case? If there is a view that psychiatric disorders should be assessed for, and ideally diagnosed or ruled out, in every case, a psychiatrist might have a role. If they are seen as an expert support to the primary decision maker, that decision maker would need to decide whether a psychiatrist was needed in every case. We know from Oregon over the years that psychiatrists were involved very frequently at the beginning of the process, and now they are involved by request in around 3% of completed assisted dying cases. We do not have data on what the involvement is across all requests.
Q
Dr Mulholland: As GPs, we can assess capacity. In this situation, the college’s position would be that we feel the GP should not be part of the assisted dying service, so we would see a standalone service that we can signpost our patients to. The GP role may go on to a different route afterwards, and it may be part of other things with palliative care and looking after the families. We think that some GPs may want to be involved and take that step, but we know from our membership surveys that we have had at least 40% of members in the past who would absolutely not want to have any part in that.
Similar to other services, such as termination of pregnancy, we think that the best option would probably be that the GP could signpost to an information service, such as something like what the BMA suggested the other day. They would not have to do anything more than that, and they would not withhold any option from the patient. We could discuss that these things exist, but we would not be doing that capacity assessment. Obviously, to give patients information about what they are going to, as you know, we would assess their capacity to take that information in, retain it and do the right thing with it for them. We would be doing that level of capacity assessment, but not further on in the process, where you are assessing whether a patient is able to make a final decision. I think Chris Whitty referred to the various levels of capacity. As the decision gets more difficult and complex, you want a greater understanding with the patient that they really know the implications of what is going on, and we just would not be doing that in general practice.
Q
Dan Scorer: The Mental Capacity Act starts from the principle of presuming capacity. The question would be whether, when someone who is terminally ill puts themselves forward for assisted dying, doubts start to emerge about whether they actually have the ability to make that decision in terms of whether they can understand, retain or weigh the information and communicate their intentions.
As I mentioned earlier, our concern is how those discussions around assisted dying are initiated. For many people with a learning disability who are terminally ill and in an incredibly vulnerable position, doctors are very important and influential figures. Having a doctor come to you and say, “What do you think about assisted dying—is that something you might want to consider?” could move them towards or into potentially accepting a course of action that they had never considered before.
That is why I was saying that it is about having advocacy support around that discussion and, as you were saying, about the role of families. Individuals should be able to choose who supports them with those discussions, whether it is friends or family members or an independent advocate—that would probably be our preference—who is specifically trained to support people with a learning disability who are considering their end-of-life options.
There is a lot that could be done in addition to what is in the Bill already to potentially much better support people who are considering end-of-life options and to have other professionals who could input into multidisciplinary discussions, potentially around capacity assessment.
Q
Dr Mulholland: Fortunately, that is not the RCGP’s bit, but I think we would be very much concerned. In our principles, we were clear that we thought that there should be no reduction in core services in general practice, nor should there be any reduction, if the Bill goes through, in funding to palliative care services, which we know are often struggling as well. This should therefore be additionally funded. Whether it occurs in the NHS is not our decision, but we would be very concerned about health inequalities creeping into any part of the health service. We are aware of the differential that occurs in lots of things—life expectancy has come out again in recent reports between different parts of the country and people who live with different levels of poverty. If the Bill comes through, we will want to make sure that there is not a differential in who is able to access it. Whether that says that it should be NHS or private I am not sure, but that needs to be considered as part of whatever comes out of this.
Q
Dr Mulholland: We see a lot of people with mood disorders of different types and of different severities. Many people with depression who are treated with antidepressants carry out full-functioning jobs and lives because of the treatment that they have and because their depression is not of that severity. If someone had very severe depression and we were accessing our psychiatric colleagues, that would be a different decision, and perhaps it is not something that would happen at that point. Most people with depression, anxiety and other mental health problems would have capacity, because we would presume it under the Mental Capacity Act, so it is not necessarily an obstruction to people being referred for anything.
(1 week, 3 days ago)
Public Bill CommitteesQ
I also heard what you said about the scaling of decision making, but within the Bill, in some of those scenarios there is no mandating; the word “may” is used rather than “must”. I want to understand your viewpoint on whether it would provide stronger safeguards if those parts of the Bill were tightened to include “must” rather than “may”, and if the reference to capacity were replaced with a separate definition of “ability”, as proposed in our amendments.
Professor Whitty: I am probably not the best person to ask about the exact drafting of the Bill in terms of “may” and “must”, but I can answer the second part of your question, which is really important.
If there were no Mental Capacity Act, there would be an argument, which has been used for a long time, that the Bill would have to define what was meant with a fair degree of clarity. It would not be able to do that with just one clause; there would have to be quite a lot of clauses, if I am honest. All systems of this sort are going to be imperfect. The reason why I think it is sensible to base yourself on the Mental Capacity Act is that it is well used and well understood in practice by practitioners every day. Having a system with two completely separate groups of assessment, one of which has never been tested in the courts or used outwith this Bill, would lead to a whole set of potential complications and ambiguities, which are not there at the moment because we have a well-tested mechanism through the Mental Capacity Act.
People should move away from the Mental Capacity Act with some caution, because I think that will cause as many problems as it solves. It is not clear to me what problem people are trying to solve by doing that, given that the Mental Capacity Act clearly makes the point that the more severe the decision, the greater the degree of capacity that has to be assumed before people can actually take that decision. That is the foundation of some of the disquiet that people have had, but it is central to how the Mental Capacity Act works in practice.
Q
“reasonably be expected within 6 months.”
Is that in line with your thoughts on the matter?
Professor Whitty: I think that is a reasonable point in time provided that, in taking that period into account, Parliament assumes that we mean a central view that this is six months, although it might be before that and it might be after. Other times would be equally reasonable, but if you are going to choose one, then six months is reasonable. It is generally very predictable that someone is going to die in the foreseeable future, but predicting whether that will be in five months or seven months is a lot harder, and there would be some caution.
Notably, in the countries that have chosen to go down an assisted dying route—a variety of different ones have been chosen—a significant minority of people die before they actually get to the point where that occurs because there is uncertainty in both directions. I think that period is as good as any other, but I want people to be clear that this is not an exact science where you can say, for example, “On 20 August.” It is not as tight as saying that a baby is going be born on a certain date. It has a wider spread of uncertainty around it. In the overwhelming majority of cases, that does not mean that it will go on for months or years longer, but there will be some degree of uncertainty.
Q
Professor Whitty: Duncan may wish to comment for nurses. For doctors, we should be very mindful of the fact that for some doctors, as for some citizens, this is a point of very strong principle indeed, therefore there will be a gradation of people feeling that they can personally be involved in it. I suspect that if they themselves did not feel able to do it—because of conscience or choice, or because they did not feel that they had the necessary skills—the great majority would have no problem referring on, but it might be an issue for some people.
Personally, my view is that we should be able to have the range, provided that people are aware in general that, if one person cannot provide it and then does not wish to discuss it, there are alternative routes. But that really is a matter for Parliament and if Parliament says, “No, actually, that is unfair on the patient, because then the patient is having to go through an extra step,” that is an alternative and perfectly reasonable principle. Parliament is going to have to balance those two principles; that is not for me as a doctor. I just think that that range of opinion needs to be thought through when people are coming to that final parliamentary decision.
Duncan Burton: If I could add to that, again, I think that bit about the wider workforce and how we would support them is really important. We have situations like this already. We have advice professionally around things such as abortions and working in embryo services and fertility, for example, so we need to make sure that the safeguards for our staff are really clear. As Chris has said, our staff will have a range of views and opinions on this, as will the wider public. So the work you do in creating this Bill is really important in terms of the advice that we give to people about signposting and having those conversations. Actually, our clinicians are having conversations every single day about the choices that people have at the end of their lives.
Q
Professor Whitty: I would hope that most doctors are capable of identifying that someone has some degree—or a large degree—of mental health distress, or mental health illness, if you wish. What not all doctors will feel comfortable doing is actually deciding whether that is sufficient to interfere with someone’s ability to make a decision with full capacity. That is where help from colleagues from psychiatry, and mental health more widely, is going to be useful.
But that should be good medical practice, in my view, under all circumstances. This Bill takes it to a high level of need because of the seriousness of the decisions being taken, but that is part of medical practice. Duncan will have discussed with senior nurses, when he when he was operating clinically, “Should we actually get an opinion from a mental health colleague”—either a community psychiatric nurse, if it is that kind of question, a psychiatrist or others—“to make that assessment?”
That is really the question, but I certainly would not want to be in a situation where the fact that someone with a terminal diagnosis will have some degree of low mood in itself just rules them out from any kind of medical intervention—this, or any other. That should not be the case. They have to have access to whatever the state and the medical profession are able to provide—again, obviously, depending on what Parliament decides on this particular Bill.
indicated assent.
Dr Green: With regard to the specific questions, no, I do not believe that a doctor has to be a specialist in the individual disease at stake to advise a patient about prognosis. I can only refer you back to what Dr Whitty said: that in the majority of cases, it is fairly clear—this applies to capacity, too—but in some cases, it is not so clear. What is important is that the doctor has the ability to seek further advice if they need it; it is not always required.
Q
“registered medical practitioner who is unwilling”
to go forward with the assisted dying request
“must, if requested…refer…to another registered medical practitioner”.
Are you happy with that clause?
Dr Green: No, we are not, because we know from our survey that some doctors feel very strongly about this. The word “referral”, to a doctor, means writing a letter or communicating with another doctor to see, but some doctors would find themselves not able to do that. For that reason, we believe that there should be an information service for the doctor to direct to. There is a particular problem with the word “referral”. Doctors would not be able to be obstructive; they have the same duties under good medical practice as they do, for example, with termination of pregnancy requests.
Q
Dr Green: We have not taken a view on the qualifications of the doctors involved. We had discussions about what grade they should be, for example, but we took the view that their skillset and training was more important than their grade or position.
Q
Dr Green: We did not take a view on that. We thought that training and experience was more important.
Q
Dr Green: That is why it is important that doctors should be able to opt out at any stage of this. There are doctors who would find it difficult to do that, and it is important that their position is respected.
(1 week, 3 days ago)
Public Bill CommitteesQ
Dr Clarke: I absolutely agree that in a small number of cases, palliative care at the highest level cannot eradicate all suffering, and cannot prevent a person from wishing to end their life and have assistance in ending their life. That is absolutely the case; I would say that it happens surprisingly uncommonly, in my experience, but it does happen.
Autonomy is the crux of the issue for me, because autonomy is predicated on having meaningful choices. Can you actually choose option a or option b? Let us say that option a is high-quality not just palliative care, but medical care in general—district nursing care or social care, for example. If that is not available to you, you are potentially being pushed towards “choosing” option b—the route of assisted dying—not freely and not autonomously, but because option a has been denied to you by real-world failures. We all know about those real-world conditions—we are all familiar with the latest winter crisis, where patients have been dying on trolleys in corridors, etc—that are preventing the actual option of a death in which dignity, comfort and even moments of joy can be maintained right up until the end of life, when that patient is getting the high-quality palliative NHS and social care that they need.
That is the crux of the issue. If you do not have that as a real option for patients, we can say that they are choosing autonomously assisted dying, but actually society is coercing them into that so-called choice because it is not funding the care that makes them feel as though life is worth living. That is why I think many of my colleagues are so concerned about legal change now. It is not because of an opposition to assisted dying in principle. It is because the real-world conditions of the NHS today are such that people’s suffering means that occasionally they will beg me to end their life, and I know that that begging comes not from the cancer, for example, per se, but because they have been at home not getting any adequate pain relief. Once you start to provide proper palliative care, very often that changes.
Q
Dr Cox: I and my colleagues have concerns about the safeguards in the Bill. It is not just the capacity assessment; we also acknowledge that prognosis is incredibly difficult to assess accurately. I would say that you cannot always identify coercion. You can identify it when it is very obvious and extreme, but when it is very subtle, we cannot always identify it. After the event, there is nobody to tell us about coercion, so it is very difficult to monitor.
The other thing that concerns me is that we are putting all these assessments on the shoulders of two doctors individually, followed up by a High Court judge. In any other clinical practice, when we are making very serious decisions, we know that shared decisions are much better quality, much more robust and much safer. In clinical practice, we make all these decisions in multi-professional teams. I would never make these decisions independently of my team, because the perspective they bring can help me to understand things that I am not seeing.
The thing that I am really concerned about is how it is possible for these doctors, even with training, to have a good understanding of all illnesses in order that they can identify prognosis—neurological, cancer and every other. How is it possible for them to really understand capacity when capacity is not an absolute; it does change and it is very complex to assess? How is it possible for them to see all cases of coercion, which can be invisible?
In addition to that, are those doctors going to be looking out for opportunities to refer to palliative care when they see somebody who has suffering that could be addressed and may change their mind? Are they looking out for untreated depression? We know that treatment of depression can result in people changing their minds about wanting to die. It is a lot to ask these individual doctors to do, and that really concerns me.
Q
Sir Nicholas Mostyn: I would frame the law to define terminal illness in the way that it is defined here in clause 2(1)(a), but where the “person’s death in consequence” is referred to, I would delete clause 2(1)(b) and substitute “suffering intolerably”.
Thank you. That brings us to the end of the time allotted for the Committee to ask questions. I thank our witnesses on behalf of the Committee; thank you for your forbearance.
We have two minutes left before the evidence session finishes. Dr Simon Opher, please ask a very quick question and perhaps we could have a short response. I do not want to interrupt our witnesses at the end.
Q
Dr Spielvogel: I literally had not formed any kind of opinion on this. When I was in medical school, it was not talked about. We did not talk about it; we did not discuss it; it just literally was not a thing, and then when it became law in California, I still had not really thought of it until my medical institution asked me whether I wanted to participate. I said, “Sure, I will give it a try,” and then with my first patient, I saw how amazingly transformative it was for him and his family. I had seen lots of death before then; I saw how tragic and traumatic it often was and how this was a dramatically different experience, and I became a convert.
Since then, I have seen many other physicians undergo the same journey with their patients. They have been very ambivalent to it until they have a patient who is asking for it. They go through it with that patient who they have known for a long time, and then they come out on the other end realising just how amazing this option is to the people who want it. Again, I am emphasising that this is a choice. For people who do not want this, they do not need to have it. For doctors who do not want to do it, they do not have to do it. But for the patients who want this, it is an incredibly powerful piece of agency.
Dr Kaan: The jurisdictions I work in have quite a bit more experience. In Oregon, of course, it has been legal since 1997, and it has been legal in Washington state since 2008. Both of those laws were actually started by voter referendum, so the general populace at large wanted this, and that is how these laws got started in both of those states. The general population has, by and large,, been supportive, and is growing more and more supportive of this as an option each year as it becomes normalised and clear that this is a practice which is careful, safe and has appropriate safeguards in place.
The medical community has also come along with that. In Washington state, we have now 15 years of practice with assisted dying. When this law was first passed, there was hesitancy in the medical community: this was an unknown, in many regards. We were the second state in the entire United States to pass this law and so the medical community was a bit hesitant. I will say that, in those last 15 years, we have seen a tremendous growth in the support of physicians and the medical community at large in wanting to make sure that this is an option for people and that they have access. Just in my own experience in Washington state—
(2 weeks, 3 days ago)
Public Bill CommitteesIt is a pleasure to serve under your chairmanship, Sir Roger. I look forward very much to the process of this Committee and to working with hon. Members to do what we can to ensure that a good Bill is presented back to the House.
I very much respect the points made by the hon. Member for Spen Valley. Nevertheless, I do have some real objections to the motion, which I encourage Members to oppose. The fact is that this debate was due to be held in public—in fact, people have travelled here in the expectation that they would be able to attend and observe our debate on the sittings motion—but last night, for reasons we do not fully understand, a decision was clearly made to table a motion that we sit in private. I would be grateful to understand why that decision was made so late.
My general point is that there is a clear public interest case. The public should understand why witnesses have been chosen and why other people have not, and if there are concerns about the witnesses, they should be aired publicly. This is the only time that the public are being consulted—that experts from outside Parliament have a chance to contribute to our deliberations. I fail to understand why those discussions cannot be held in public. The only argument that I can imagine—and the hon. Member for Spen Valley made it—is that Members might for some reason be uncivil or speak disrespectfully about potential witnesses, which I do not for a moment believe. I am sure that you, Sir Roger, or the other Chairs will keep us in order throughout our proceedings.
We are here to talk about the overall balance and particular qualifications of the witness list. Looking at the witness list that was presented this morning by the hon. Lady, I have very serious concerns, which should be aired publicly, about the list. It includes eight witnesses from foreign jurisdictions, who are being called to give evidence from abroad; all are supporters of assisted dying in their jurisdictions. There are no people speaking against the operations of assisted dying laws internationally. There are nine lawyers on the list—all of them, with the exception of three who appear to be neutral, in favour of a change in the law. There is not a single lawyer against this Bill. Sir James Munby was suggested, but I understand he has been removed. There might be a perfectly good reason for that, but he has spoken against the Bill.
There is nobody on the list from deaf or disabled people’s organisations, but the UN convention on the rights of persons with disabilities recognises the importance of engaging with such organisations in laws of this nature. With the exception of Dr Jamilla Hussain, there is no one on the witness list who can speak to the equality impacts of assisted dying.
Order. I appreciate that the hon. Member for East Wiltshire, and indeed all members of the Committee, received the final version of these documents fairly late in the day, and I am not unsympathetic to hearing what any Member wishes to say, but now the hon. Gentleman is going rather further down the brief than he is probably entitled to. The motion on the amendment paper is very narrow. The Question is, quite simply, that the Committee should sit in private.
The Bill as proposed is extremely similar to the Australian law, but it is not similar to Canadian law. Therefore, I do not see that bringing Canadian expertise into the Committee is of any use at all. I also back the right hon. Member for North West Hampshire when he said that in almost all situations we are just replacing one expert for another, so the only contentious bit is whether we have people from Australia in support of or against assisted dying.
A split of 38 to 20, with the other witnesses being neutral, is appropriate and actually reflects the vote in the House. I do not see that as a disadvantage. Are the witnesses really going to change what we are saying? We need to listen to them and learn from them, but having some of them against assisted dying is enough to give us due discipline and ensure we listen to exactly what the problems might be, so I disagree with the hon. Member for East Wiltshire.
Very quickly, let me say that 38 to 20—two to one—was not the split that happened on Second Reading. There was a much more finely balanced position in the House. I accept that the hon. Gentleman does not want to hear from Canada and I do not blame him—people who are in favour of the Bill are desperate to keep Canada out of it. Okay—let us look at Australia. There are many people in Australia—MPs included, if we could hear from politicians—who continue to profoundly oppose the Bill on the grounds that it is not working, it is dangerous and it is being expanded. Let us hear some alternative views if we are interested in foreign experience.
(2 months, 1 week ago)
Commons ChamberI am one of those medical practitioners, sometimes known as a doctor. I have been a GP for 30 years, and every year I look after four or five cases related to palliative and terminal care, so I have a lot of experience in this area.
I would like to make some quick observations. First, a lot of patients who are dying of cancer ask whether we can curtail their life and finish it a bit early. That is a very common thing that they ask. I have had two patients go to Dignitas on their own, without family members, because the family members were fearful that they would be arrested on their return. We have been discussing giving a double dose of morphine. I think that almost all doctors in terminal care have probably done this—doubled the dose of morphine knowing that it might curtail the patient’s life. That is a big fudge. It puts me in a very vulnerable position. We need to resolve that.
I think we are getting a bit confused between palliative care and assisted dying. A lot of people who receive excellent palliative care still request assisted dying. They are not mutually exclusive. I totally support what everyone is saying about developing palliative care, because that is really important, but that should not go instead of assisted dying. The things go together. Assisted dying is one of our tools in palliative care, as I see it going into the future.
I have a couple of points about coercion, which people like me need to assess. If someone says that they feel like a burden, that is immediately not a good reason to approve assisted dying. Doctors are trained in assessing capacity, as has been said, but we are also trained in trying to find out the reasons someone wants to end their life. I think it is judging doctors harshly to say that they will not spot coercion. Interestingly, the only change in Australia was that they found that the judiciary review did not add much to the process. Otherwise, there does not seem to be a slippery slope, as long as the legislation is carefully done.
The hon. Member opened by referring to himself as a doctor and medical practitioner. Perhaps he could help with the difficulty I have with the Bill, which I would dearly like to support. There are provisions in it that allow the Secretary of State to bring forward regulations so that the independent doctor can be an alternative medical practitioner. There is also a section that makes the court look like an optional process, so I do worry that there are not protections in the Bill for two doctors. Perhaps he could help with that.
I do think it is right for this Bill to require two doctors and a judiciary review, because this is new legislation and we must be sure that it is safe. These safeguards are incredibly important.
I will finish simply by saying that having been a doctor all my life, I have tried to empower patients to make their own decisions over their healthcare, and this is a great opportunity to do that. I had one patient who had a terminal diagnosis and hanged himself. The family were devastated. It was a horrible way to die. I felt that we had failed as a medical profession. Let us not fail as a Government, a judiciary and the Houses of Parliament. Please support the Bill.