Terminally Ill Adults (End of Life) Bill (Third sitting)
Tuesday 28th January 2025
(2 days, 18 hours ago)
Public Bill CommitteesTerminally Ill Adults (End of Life) Bill 2024-26 View all Terminally Ill Adults (End of Life) Bill 2024-26 Debates Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: Public Bill Committee Amendments as at 28 January 2025 - (28 Jan 2025)
The Chair
Q
Dr Clarke: I am Dr Rachel Clarke. I am a hospital palliative care doctor with a decade practising in a whole range of settings: the community, hospices, small district general hospitals and a large teaching hospital. I am also a former journalist and a current author who has written four best-selling books for the public about medicine in the UK. I campaign very actively for greater awareness amongst the public around the topic of death and dying. I have extensive experience teaching communication skills to medical students, junior doctors, nurses and other members of multidisciplinary teams. My personal view on assisted dying is that I am not opposed in principle, but I have significant concerns around the issues of consent and capacity.
James Sanderson: Good afternoon. My name is James Sanderson. I am the chief executive of Sue Ryder, a leading palliative and end-of-life care organisation, which also supports people living with grief and bereavement. I have recently joined Sue Ryder and have been there for six months. I was previously in NHS England as director of community health services, personalised care and palliative and end-of-life care. I am also the former chief executive of the Independent Living Fund.
Sue Ryder, as an organisation, has adopted a neutral position in regard to the assisted dying Bill. I am here today to provide information regarding the provision of palliative and end-of-life care and some of our concerns in relation to how the system is currently operating across the country.
Dr Cox: I am Sarah Cox. I am a consultant in palliative medicine. I have been in palliative care for over 30 years. I am also the president of the Association for Palliative Medicine of Great Britain and Ireland. It is a member organisation with over 1,400 members. Naturally, there are different views amongst our membership, but in polls over the last 10 years, the results show that about 80% of our members are opposed to the legalisation of assisted dying and about 5% are in favour. The reason for this opposition are many, but include the inadequate current provision of palliative care, which does not offer patients a choice, concerns about how the safeguards would be enacted in this Bill, and concerns about the impact of assisted dying on palliative care resources, funding and the workforce.
Dr Ahmedzai: Thank you very much for inviting me here today. My name is Sam Ahmedzai. I am a retired professor—a professor emeritus—of palliative medicine from the University of Sheffield. I have—not boasting, Sarah—39 years of experience in the speciality. I was one of the people involved in setting up the new speciality of palliative medicine back in the 1980s. My experience is of working in a hospice for nine years, and then 20 years as a consultant and professor at the University of Sheffield.
I am a clinical academic, so I very much take an evidence-based view of healthcare, and palliative care is just another kind of healthcare. For instance, I chaired the National Institute for Health and Care Excellence guidance on the last days of life. I was also clinical adviser to the NICE guidance NG142 on service delivery in the last year of life. I come from that background. I have experience of lecturing and working around the world as a visiting academic. For 10 years, I was the visiting Spinoza professor at the University of Amsterdam, where I lectured people who were delivering euthanasia in Amsterdam about what they could do through palliative medicine as well. That is where I am coming from. I am a supporter of changing the law, and I commend the Bill. It is the safest I have seen in the world.
The Chair
Members should indicate if they wish to ask a question and who they wish to ask.
Naz Shah (Bradford West) (Lab)
Q
James Sanderson: There are clearly gaps in the provision of palliative care. However, to start with a positive, I think that the provision of palliative care in this country is exceptional. We are leaders in many ways across the world in the way in which we support people who are facing those challenges in their lives. However, our findings in relation to palliative care show that, although about 90% of the population could benefit from palliative care, only 50% of people are currently able to access it.
One of our concerns is that the provision of palliative care across the country is quite patchy at the moment. I do not think there has been a thorough assessment of the level of palliative care in place—not just the provision of palliative care specifically, but how other services, such as district nursing services, interact with palliative care. In some areas, the provision of district nursing services for general care and support for people who may be at the end of their life is very strong and in other areas it is not so strong.
At Sue Ryder, there is one thing that we are really concerned about. In our survey, 77% of respondents said that they were concerned that the lack of availability of palliative care might enable more people to consider an assisted death than otherwise would. That concern went up to 84% for those who were in favour of assisted dying. We really need to look at the provision of palliative care and the specifics in the Bill that make reference to the fact that people should be offered what is available to them. We need to have a much clearer definition of what “available” means.
Naz Shah
Q
“I have studied the reports from, and spoken with medical and nursing clinicians from US and Australian jurisdictions and am satisfied that external coercion has never been reported or led to a prosecution.”
The state of Oregon carried out a survey of people who died under its assisted dying scheme in 2023. Its report stated that 43% of those who chose to die said they did so because they felt they were, and I quote directly from the term used in the survey, a
“Burden on family, friends/caregivers”.
Is that something you are prepared to see happen in the UK?
Dr Ahmedzai: It goes absolutely to the core of being British—we are always saying sorry, aren’t we? We apologise for everything. In everything we do, or everything we might do, we think we might be treading on toes and are always worried about being an imposition. All my professional life, I have come across patients and families in which there clearly is that feeling going on, usually with an older person or even a younger person who is drawing a lot on the emotional and physical resources of the family. It is natural that we feel a burden; it is impossible to take that out of human nature.
The issue is, does feeling that one is, or might become, a burden something that could influence a decision as major as looking for assisted dying? In that respect, I look to all those jurisdictions that have been offering assisted dying in different ways, and I have never seen a single case ever taken to the police or prosecuted. Evidence I have heard from other jurisdictions shows that, yes, it is possible—we all go through life feeling that we are a burden on someone—but it does not influence people in this particular decision. If anything, I am told that, in other jurisdictions, families are saying, “No, don’t do it.” They are exerting negative coercion—“don’t do it” coercion—but people are saying, “No. It’s my life. I’ve made my mind up.” They have mental capacity, and we respect that.
Sean Woodcock (Banbury) (Lab)
Q
Dr Clarke: Based on my clinical experience, I would push back on that in the strongest terms. I am the kind of doctor who believes there is nothing to be gained from sugar coating reality. We have to be absolutely honest with patients and the public about shortcomings, failings and areas where my profession and the rest of the NHS are getting things wrong.
It is my clinical experience that not only are the majority of doctors not necessarily trained in spotting coercion explicitly, but they are often not trained explicitly in having so-called advance care planning conversations with patients around the topic of death and dying, and how a patient would like the end of their life to proceed. It is almost impossible for me to overstate how much avoidable suffering occurs right now in the NHS not because of a lack of resources for palliative care—although that is an enormous problem—but because of a lack of confidence, skill and expertise among the medical profession writ large with these very difficult conversations.
We are all familiar with the idea of death and dying being a taboo in society. People are scared of it, and they hesitate to bring it up with their friends and family. In my experience, many medical students and doctors also suffer from that anxiety. They are scared, and they find it a taboo subject. What that means is that sometimes coercion occurs because the doctor—the consultant responsible for this person’s care—will not even bring up the fact that they think the patient is dying, because it is an uncomfortable conversation. Conversely, I have worked with senior hospital consultants in the NHS who have deliberately prevented our team from accessing their patients, because they believe that the hospital palliative care team wants to kill the patients, and that if I go and see the patient, I will give them a lethal dose of drugs.
These are the kinds of extraordinary misunderstandings and failures to prioritise patient autonomy that are happening now. That is even before we get started on conversations around whether someone would like to consider assisted dying, so it is a huge problem.
Dr Marie Tidball (Penistone and Stocksbridge) (Lab)
Q
Dr Ahmedzai: I have visited many of the jurisdictions around the world—such as Oregon, where I met the original judge who brought in the law, as well as the doctors, nurses and patients involved—and it was clear to me that if patients had not accessed palliative care, they were pointed towards it. Obviously, you cannot force anybody to go and have palliative care, but they were certainly informed about it.
In the Netherlands, I commend a system for doctors called SCEN—support and consultation on euthanasia in the Netherlands. These are trained doctors working for the equivalent of the BMA, I believe, who, as Dr Clarke has referred to, are going and supporting doctors who are not familiar with things. They often come from a background of palliative care and pain medicine, so they are making options available that other doctors in the process, for instance, have not brought up. In Australia, there is clear evidence that palliative care is becoming more available.
The European Association for Palliative Care produced a report more than 10 years ago in which it examined all the countries in Europe at the time, and it found there was evidence that palliative care was improving in scope and availability alongside the forms of assisted dying that were happening there. I am reassured that bringing in some form of assisted dying, particularly the form proposed here, would be a boost to palliative care.
One of the things I would like to see is that anybody who is involved in the process is constantly asking the patient, “What about palliative care? Have you actually accessed it?” Right now, if they have not raised their hand and asked for assisted dying, no one has that conversation with them. They are in a vacuum and a bubble, and not receiving palliative care, whereas this provision would possibly make it more available.
The Chair
Order. I do not want to squash any discussion, but I ask Members and the panel to bear in mind that we have until 3.15 pm for this session. I will be as lenient as I can with questions.
Dr Tidball
Q
Dr Ahmedzai: In the interests of brevity, yes.
Dr Tidball
Q
“entirely consistent with current medical practice and with compassionate care”
to raise assisted dying. You also said that raising the topic did not have adverse effects. How could clause 4 be strengthened to ensure that patients are presented with a range of treatment options at the end of life and relay any concerns that others have raised about suggestibility where this is mentioned in isolation?
Dr Ahmedzai: That is a complicated question. The first point is that right now, as Dr Clarke pointed out, it is scary to patients to be told that they may actually be receiving palliative care. When it has been mentioned—by an oncologist, for example—many patients say, “I do not want that. Don’t let them come anywhere near me or anywhere near my relatives.” It is not unusual that people may have an adverse reaction to just hearing about the service, but here the difference is that the person has actually asked for it.
I personally believe that it would be advantageous if there was formal training, as Dr Clarke has mentioned, specifically to have the kinds of conversations that we now talk about, such as about psychological issues and suicidal tendencies. It used to be thought that if you mentioned suicide to somebody, it would give them the idea, but of course it does not; it saves them, because they say, “Thank you. Yes, I was having those thoughts.” Bringing up assisted dying is never going to be harmful to the person, even if they had not thought of it. They will just say, “Well, it is not for me.”
Rebecca Paul (Reigate) (Con)
Q
Dr Cox: Professor Ahmedzai has talked about the evidence, which was written up to 10 years ago. There is actually more recent evidence, looking at the last 10 years, where European countries and American states have been assessed in terms of the development of palliative care services. That more recent evidence shows that although palliative care services have improved in those countries where assisted dying has been implemented, they have improved three times more in countries where assisted dying has not been implemented. The evidence from that study shows that the implementation of assisted dying is impeding the development of palliative care services.
The other thing we are really concerned about is the impact on funding. It is unclear how this is going to be funded. It looks as if it is going to be within healthcare, and if so, there will inevitably be competition with other aspects of healthcare, including palliative care, for those limited resources. There are finite numbers of doctors, nurses and side rooms in hospitals. If palliative care and assisted dying were funded from the same pot, I think there would be a massive detrimental effect on palliative care because we would be in competition for a limited resource.
I am also concerned about our palliative care workforce, which we know is already in crisis. Eighty-three per cent. of our members told the Royal College of Physicians in 2023 that they had staffing gaps, and more than 50% were unable to take leave because of those staffing gaps. Forty-three per cent. said that if assisted dying were implemented within their organisation, they would have to leave. This has a massive impact on palliative care, in terms of its potential to develop both our funding and our workforce, who are really concerned about this.
Rebecca Paul
Q
Dr Cox: The first thing to say is that palliative care is currently inadequate. Not only do we need to ensure that it does not decline, but we need to massively improve it so that this Bill offers patients a real choice. We know that effective palliative care can change a terminally ill person’s point of view from wanting to die to wanting to live.
We also know that 25% of people who die in this country do not have the palliative care they need. That is more than 100,000 people a year. Providing palliative care, which might make their lives better, reduce their suffering and even change their perspective on whether they would want assisted dying, should be our priority in reducing suffering in this group.
I do not know how we prevent this from happening. Making sure that palliative care has separate funding is important, because assisted dying and palliative care need to be separate in how they are delivered and in how they are funded.
Sarah Green (Chesham and Amersham) (LD)
Q
Dr Clarke: The fundamental principle is always that, by default, the patient has capacity unless there is clear evidence that they do not. We presume that patients have capacity. As doctors, we are obliged to ensure that patients have informed consent when deciding between different treatments. That means we need to lay out the whole array of treatment options, and the risks and benefits of each, to empower individual patients to make decisions for themselves.
Regarding the issue that has been alluded to of whether doctors should be prohibited from raising the issue of assisted dying, it is my belief that that would fundamentally alter the doctor-patient relationship. If consent is not informed—and it is not informed if we are not laying out all the different options to a patient—we are denying patients the opportunity to make decisions for themselves. A patient is always able to refuse every treatment, and in particular every life-prolonging treatment, that they choose to, provided they have capacity. We, as doctors, may think that a decision is unwise, but that is irrelevant, because those days of bad old paternalistic medicine are gone. The patient makes the choice. If a patient says, “I do not want chemotherapy. I do not want to eat. I do not want anything at all—no treatment”, we respect that, unless they lack capacity.
The elephant in the room with all of this is the capacity assessments. I would suggest that anybody who pretends that those assessments are easy and routinely done well in the NHS has not got enough experience of observing that happening. I teach capacity assessments to doctors and medical students, and it is often the case that they are very poorly conducted. The doctor often does not understand the criteria for assessing capacity. That is if it happens at all. Sometimes, a paternalistic doctor will decide that a patient is dying, and we should stop their antibiotics because they are clearly now at the end of their life. They have a chat with the family, who say, “Yes, we agree,” and nobody talks to 82-year-old Mrs. Smith and asks her what she feels about it, because they assume that she does not have capacity because she is old. I see that regularly. Sometimes, a palliative care team will intervene in those situations, because the professional and legal framework that is meant to guide this practice is just not happening. It is a very fraught and tricky area.
If there is one thing that I would say to the Committee regarding making the Bill as robust, strong and safe as possible, it is: please consider seriously the matter of education and training from day one of medical school onwards. Death is at the periphery of a medical school curriculum. Death and dying are not taught. You might get a week of palliative care in five years, and that has knock-on effects all the way through, at every level of seniority in the medical workforce.
Sarah Green
Q
Dr Clarke: Yes, I think that in the spirit of transparency and making this as safe as possible, it needs to be significantly strengthened. I would suggest that there need to be more safeguards in place. For example, if anyone in a hospital—whether staff, patient or family member—has concerns around a particular case, there should be mechanisms for those to be raised in a proactive way. Just as we have guardians of safe working and freedom to speak up guardians in hospitals, those opportunities to assess and appraise the safety in real time once a Bill is in place—I just do not think they are robust enough at all. The more we can have of that, the more that will allay people’s fears.
Daniel Francis (Bexleyheath and Crayford) (Lab)
Q
Dr Ahmedzai: You have caught me on the hop, because I cannot quote the level of training that doctors have received elsewhere, except for examples in the Netherlands, where there are additional doctors who are, through their medical association, trained specifically in assisted dying. I cannot tell you the number of years’ experience that doctors have in other countries. I felt that it was self-evident that you would want doctors who are experienced—three years, five years or whatever post qualification—and who have seen real life. It is up to the medical associations to stipulate how much experience, but I would not like the idea of a doctor immediately, having got their certificate of training, going off and making these kinds of decisions. That is why I suggested that ballpark figure.
Daniel Francis
Q
Dr Ahmedzai: Probably not, but this is a very, very special situation, and it may be, once it has become embedded in the health service, that that stipulation could move back.
I am so glad that Dr Clarke keeps coming back to training. One thing that is absolutely needed if this Bill goes forward is to take the topic of assisted dying out of being an optional training—where people might sign up for a course—to become mandatory. In the NHS, we do mandatory training for all sorts of things, including washing hands, lifting and basic life support. There should be basic dying support mandatory training as well. Why do we not have that? That kind of provision would become part of training doctors up to become good at those conversations that Dr Clarke is obviously involved in teaching, and in ensuring that they keep up to date with how the law is changing too. I would look to the royal colleges and the GMC to lead on those aspects.
Dr Simon Opher (Stroud) (Lab)
Q
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.
Danny Kruger (East Wiltshire) (Con)
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.
Kit Malthouse (North West Hampshire) (Con)
Q
Dr Cox: There are two differences that I would identify. The examples you give are of somebody who may be naturally dying and is being kept alive, so the difference is that you are withdrawing a treatment; you are not intentionally killing them. This is the first difference with assisted dying.
The second difference, I would say, is that you are absolutely right that we do make those decisions with patients—with their families, if they wish—but in a multi-professional team. I would almost never make those decisions as an individual doctor without the support of my colleagues, for several reasons. First, as I have said already, that makes for much better decisions—they are safer and more robust. Secondly, the moral distress associated with these decisions is much less if you share them. That is also a worry for me—what happens to the moral distress of the co-ordinating doctor and the other assessing doctor? They are carrying a lot of moral distress. My understanding is that a very small percentage of doctors will want to engage with this—maybe 1% or 2% of all doctors will want to be in those assessing positions. They are carrying a lot of that distress because they will be doing a lot of assessing.
Kit Malthouse
Q
Dr Clarke: I think that is not quite right, and certainly not what I intended to convey. There are rules. There are very clear legal and professional rules and guidance and protocols around how to have these conversations. However, in practice, the quality of the conversations is contingent on the confidence, expertise, training and background of the individual clinicians having the conversations. There can be a great deal of inter-doctor variability in how conversations are conducted. In terms of addressing that, I would suggest that in an assisted dying scenario the crucial thing is to make the guidance and training as robust as it possibly can be to reduce the inter-practitioner variability.
Kit Malthouse
Q
Dr Clarke: No, of course not.
The Chair
Order. We have half an hour left. Nine people have asked questions and there are eight people left who want to. If we want to get through the questions by 3.15 pm, people will have to be self-disciplined when they ask their questions.
To the panel, forgive me, but we need answers in as reasonable a time as possible given the circumstances. Dr Clarke, if you wish to answer the last point, feel free.
Dr Clarke: Of course we want as much autonomy for as many patients as possible. The issue is around safeguards. If, for instance, you say to a vulnerable patient who has just been told they have a diagnosis of terminal cancer, “Have you thought about assisted dying?”, I would suggest that stating it broadly like that is a form of pressure and that you are potentially unintentionally coercing that patient. The very act of raising assisted dying in that way will make that vulnerable patient think, “God, is this doctor telling me that my life is not worth living any more?” Autonomy is much more subtle and complicated than we assume from outside.
Juliet Campbell (Broxtowe) (Lab)
Q
“Sadly, only half the people who need palliative care receive it.”
In your opinion, who are the people who receive palliative, and who does do not?
My question to Dr Clarke is similar. You have talked about the population being
“carved up into two groups…those who deserve to live and those are expendable”.
Could you expand on that quote and the two groups you referred to, as well as the impact that has on their treatment and care?
James Sanderson: You draw a really important point about not just the provision and totality of palliative care across the country but the inequity of access. Unfortunately, we find that the diversity of people who are accessing care in hospices across the country is less than those who are dying in hospital—43% of people currently die in hospital.
One of the things we really need to do is move to a new ecosystem of palliative care that looks at supporting people in different settings. We need specialist provision in hospices to support people with significant needs, but increasingly hospices are reaching out beyond their walls into the community, and 80% of Sue Ryder’s work is in people’s own homes. People tell us that they want to die at home, so supporting people in their own homes enables us to access more diverse communities and get to people in their own setting.
Increasingly, one of the things we feel is necessary is the provision of support inside hospital. Alongside wards, we would bring support to that 43% of people who are currently dying in hospital, to ensure there is equality of access in all places, both in in-patient settings and in the community. You draw a really important point that we have to look at the totality of provision and ensure that, when someone is offered palliative care—the Bill talks about that provision being available—there is universal access, in terms of the type of palliative care available and the access for everybody in society.
Dr Clarke: My comment refers to the fact that there is an immense gulf between the theory of the NHS being a cradle-to-grave service—or a service that cares for us at the end of life as it does at the start—and the reality. The reality that I see every day at work in my hospital is patients coming into the emergency department from the community sometimes in utter, abject misery, in agony, with a lack of dignity. They have been forgotten completely. They are not getting healthcare or social care, and no one cares about them.
Even in the hospital, patients who have a terminal diagnosis are sometimes cast out into the corners of the hospital. There are hospitals, and mine is one currently, where we do not even have a 24/7 palliative care service face to face. Every night in my hospital, and every weekend from Friday to Monday, you cannot see a palliative care nurse or doctor, despite the fact that for a number of years that has been an NHS standard. That is an absolute disgrace and it shows how little people who are dying are truly cared for in a civilised society.
It does not necessarily have anything to do with assisted dying, except that if we do not address that simultaneously, some of those people will “choose” to end their life, because we as a society do not care about them enough to give them the care that might make life worth living. Surely that is a travesty for Britain.
Dr Neil Shastri-Hurst (Solihull West and Shirley) (Con)
Q
Dr Cox: My understanding of the plan is that in the Bill—forgive me, but I am sketchy on this—the aim is for the registration to be as a natural death. It would not be referred to the coroner, and “assisted dying” would appear on the death certificate.
I am also a medical examiner. My concern is that, as a medical examiner, I am obliged by law to scrutinise all deaths to ensure that a referral to the coroner is not required and to identify any learnings. What concerns me in that role is whether enough recording is happening around decision making and the process to do my job properly. With my medical examiner hat on, do I know what happened? I do not see anything written down in the Bill about the records that are to be kept. What happened when the patient took the substance? What happened afterwards? Were any actions taken in the meantime? That is not so much something I have thought about a lot with my palliative care consultant hat on, but as a medical examiner it concerns me.
Dr Clarke: For the sake of time, I do not have anything to add. I completely agree with that.
Jack Abbott (Ipswich) (Lab/Co-op)
Q
Dr Cox: In European countries and American states.
Jack Abbott
Q
Dr Cox: I suppose it depends who you are. If you live in one of the postcodes where you cannot get palliative care, if you are socially deprived, if you are a member of an ethnic minority or if you have a lung cancer diagnosis, you will not get very good palliative care in this country. I think that is awful.
Jack Abbott
Q
Dr Cox: The position we would ask you to consider is whether this is the right time to bring in a law to give people a choice of assisted dying, when they do not have the choice to have good palliative care.
Jack Abbott
Q
Dr Cox: The NHS is very different from any other jurisdiction—
Jack Abbott
Yes, so the direct comparison is not necessarily relevant. Is that correct?
The Chair
I understand that, but address it through the Chair.
Dr Cox: Palliative care may well have improved in this country over those years when it also improved in other countries where assisted dying was not available. What we are saying is that there has been chronic underfunding of palliative care, so where we are now is inadequate.
Tom Gordon (Harrogate and Knaresborough) (LD)
Q
Dr Cox: I accept that there will be people even with a very good palliative care system who would still choose assisted dying. We do not currently have the very good palliative care system that we need. That is the thing that concerns me.
Tom Gordon
Q
Dr Cox: I will give you some examples. We need to make sure that the 75% to 90% of people who are dying and need palliative care are getting it. We need to make sure that there is not inequity in palliative care, so that you do not have to be white and rich and have cancer to get good palliative care. We need to make sure that hospitals have seven-day services. Seven-day-a-week cover is unavailable at 40% of hospitals. We need to make sure that communities have telephone advice services at night. One in three do not have any advice overnight for patients and their families to access. There are some concrete things that we could change to demonstrate that we are delivering a good service. But currently we are not.
Tom Gordon
Q
Dr Cox: I would love to see it continue. I am part of the commission on palliative and end of life care. There is no guarantee that the recommendations of that commission will be funded, and that is what concerns me. I would love to see that happen. Would it not be great if the two could happen simultaneously? But there is no guarantee that that will happen.
James Sanderson: I want to come in on your point and agree with Sarah’s points. Obviously, we welcomed the Government’s announcement of the additional funding for the hospice sector, but the Committee will be aware that the hospice sector currently receives only about 30% of its funding from statutory sources. We are therefore reliant on the good will of the population to raise money and support us in various ways, and through retail and other ventures that we have.
On the point about universality of service, we have in the Health and Care Act 2022 a requirement for integrated care boards to commission palliative care services that meet the needs of their population, but although there is guidance as to what that should look like, there is not universal take-up of that guidance and delivery of all of the stated services. Although that is outside the scope of this Bill, it comes back to the context of how much the overall position can be strengthened across the country. The context for anybody looking to make a decision is within the same space. As Dr Clarke said in respect of informed choice, if the context is the same for everybody, we can have more confidence that that informed choice is made at the right level.
Kim Leadbeater (Spen Valley) (Lab)
Q
To go back to your point, Mr Sanderson, it is important to acknowledge the fantastic work that palliative care professionals do. Indeed, it is extremely important that we are having these conversations, which is why we gave extra time to this panel of witnesses.
Dr Cox, on your point about the pressure on the individual doctors involved in the process, the Bill is very clear that if they do not have the relevant specialism, they must refer to a specialist in that condition, and they “can” refer to a psychiatrist. There is probably consensus that we maybe need to strengthen the Bill in that regard. When there are doubts around capacity, doctors probably “must” refer to a psychiatrist. That is something I am taking away from these sessions.
I was interested in the comments about the multidisciplinary approach. We heard about that this morning from colleagues in social work and in nursing. I would love to know your thoughts, Dr Ahmedzai, about the idea of a multidisciplinary approach. I think there is a lot of value in that.
Dr Clarke, on this concept around training, it worries me that we have seen this afternoon a very different picture painted by you and others compared with what we heard this morning, when we had doctors and nurses telling us that they regularly assess for capacity and coercion. They said it is part of their day-to-day work and they were very confident in their ability to do that. Training is fundamental, and this is an opportunity to look at gold-standard training. I would be interested to know your thoughts on that.
Dr Ahmedzai: You asked me about the multidisciplinary nature of this. I am really glad you raised that, because we seem to be focusing on palliative care as being very professional, and I would remind people that there are levels of palliative care. A lot of palliative care is given not by specialists like the three of us here but by generalists—either GPs, as we have heard, or by oncologists or geriatricians. When we talk about increasing palliative care and improving palliative care, it is not just about more doctors like us working at a specialist level.
The other thing is that it is not just doctors. We have to acknowledge that nurses are on the frontline; they do so much more than doctors. When doctors clock off at 5 o’clock in those sad institutions that still do not provide 24/7 cover, there are nurses at the bedside all around the clock. Then, there are social workers, physiotherapists and others. If we are talking about meeting the needs of people who may not necessarily have pain but have other forms of suffering or worries, which are not even physical—the loss of dignity and the loss of independence—nurses are so good at supporting people in that. A doctor will just get in the way.
What we need to do is make sure that we are addressing the reasons why many people choose this. I know, from speaking to people abroad, that it is loss of dignity and loss of independence. Is that not a legitimate reason for wishing that you were not a burden on somebody, or on the state even? It is really important that we consider that.
The other thing to bring in as well, if we are thinking about the big picture, is another elephant in the room: palliative care is not strictly speaking actually in the NHS—not all of it. A lot of it is outside of the NHS, for historical reasons from 50 or 60 years ago when decisions were made. Although there are excellent charities providing discrete areas of it, we rely so much on non-NHS services. You would never think of going to a charity to get your heart transplant or your kidney dialysis. We need to confront the fact that palliative care is fractured because of that history and the genesis of how palliative care came to be. It is not just NHS. We must think about the multidisciplinarity.
Dr Clarke: Regarding training and how much it is required, I would not be the first person to make the observation that sometimes doctors can be very pleased with their own abilities at a particular practice, and that practice might be having a conversation where you are assessing someone’s capacity.
What is interesting as a palliative care specialist is that I and my team will be asked to get involved with patients in every possible bit of the hospital—surgical wards, medical wards, intensive care, emergency departments—so you actually see a huge number of patients being treated by many different teams and many different doctors, junior and senior, all of whom are having these difficult, nuanced conversations around the end of life with varying degrees of skill. Of course some doctors and nurses are superbly skilled at having them, and I would say that there are many who are not.
The reason training is so important is that it is a little bit like Donald Rumsfeld’s unknown unknowns. You might not even be aware of the fact that you have caused a patient or their family distress. In a conversation where fear is a dominant part—the patient is fearful of suffering misery and loss of dignity at the end of life, but they may not voice that—you as the doctor can be completely oblivious of the fact that you have sort of stamped over those unvoiced fears with your hobnail boots. You are not aware of it.
This idea that a vulnerable patient needs to be absolutely at the centre of any conversation you are having is quite radical in some parts of the NHS. It needs to be taught much more assertively from day one of medical school, so that vulnerable patients are always at the centre of the room. That is why I think the single most important thing for the Bill and its safety comes down to training and actually recognising that these conversations are difficult and nuanced. If we assume that, we are going to make sure that the Bill is as safe as it can be.
Lewis Atkinson (Sunderland Central) (Lab)
Q
James Sanderson: I welcome the provision in the report. What is necessary is a benchmarking of the current position. Rather than waiting a significant period of time to do a review, we need to benchmark the current state of palliative care and then base subsequent reviews on any changes. As I mentioned before, we also need to look at the wider context. If we look narrowly at the provision of palliative care, we will not properly see what goes on across the whole environment of the health service and social care.
We have mentioned the fact that district nurses and general practitioners are providing a huge amount of palliative end-of-life care, so it may not just be what goes on inside hospices and in palliative care teams in hospitals. I agree that that needs to look at the demographic information so that we are collecting details on who is accessing palliative care and where, and the certain types. All that is necessary as part of the review.
Dr Cox: I agree completely that we need to be doing reviews now and in the future regularly on palliative care aspects. I also think there is an opportunity to write into the Bill other monitoring that would be really helpful in ensuring safety on an ongoing basis. That includes monitoring in terms of decision making—how often assessing doctors refer to others, how often they disagree and what happens after the declaration.
In the Bill there is, as far as I could see, no limit to the delay between the declaration and the request for the substance. That would be an interesting thing to look at in the future, because somebody could delay for six or eight months. Do we do another capacity assessment then? That is a tricky question. What about the taking of a substance? We have not talked about that. There are a lot of things we could look at in future that would be really helpful to monitor.
Lewis Atkinson
Q
Dr Cox: It is really difficult to know how many people who die by suicide because of their terminal illness would instead access assisted dying, and it is really difficult to understand the impact of assisted dying legislation on that. If we look at the evidence of suicide, we know that it is increased in people with serious illnesses, but it is actually increased in the first six months after diagnosis, not in the last six months of their lives, so it is about the trauma of the diagnosis. What we need for that is better mental health services, better support around diagnosis and earlier palliative care.
The other piece of evidence that I would offer to you is that the global picture of what happens to suicide rates after assisted dying legislation is introduced is confusing and mixed. But there are jurisdictions, for instance Germany, where after the introduction of assisted dying legislation the incidence of suicide has gone up year on year. I do not think we can say that introducing assisted dying legislation will stop those suicides.
Rachel Hopkins (Luton South and South Bedfordshire) (Lab)
Q
I was struck by the way the RCN talked—and you, Dr Clarke, used the word as well—about not being paternalistic, about having the patient at the centre of that conversation, and about ensuring that we listen to the patient and ask them, “What is it that you want?” That, for me, is all about autonomy. Do you agree? The emphasis must be on patient autonomy and their choice at the end of life.
Dr Clarke: One hundred per cent. Sometimes, those of us who work in palliative care almost see the extent to which we try to place the patient at the centre of everything as quite radical, when contrasted with a lot of the other medical specialities. My opinion about what is best for a patient does not matter; their opinion is what counts.
The power of the multidisciplinary team, and the reason for thinking that it may be worth considering amending the Bill so that there is a greater role for a multidisciplinary team, is this: the fact that everybody in that team brings their unique perspective. In my hospital, whenever there is a tricky issue regarding a palliative patient, we will have an MDT. There may be 10 people in the room, all discussing the issues. It might be that someone has decided that they want to withdraw their life-prolonging treatments, or they want to have life-prolonging treatment and, for whatever reason, it is really complicated. We will have the patient, their family, doctors, nurses, social workers and dieticians—a big group of people—in the room because that is the way to make the decision most safely and most effectively, in terms of enabling the patient to have the treatment that they wish to have. It is incredibly important to have that.
Rachel Hopkins
Can I ask Mr Sanderson to reflect on that, for the different context, Mr Dowd?
The Chair
No. Order. We have two and a half minutes to go. One other hon. Member wants to ask a question. I want them to come in.
Sarah Olney (Richmond Park) (LD)
Q
Dr Cox: I think it is a choice for the patient. It is always a choice for the patient who they want to involve from their social circle, whether that is family or friends. However, I think that if the patient wants the family involved, then they absolutely should be, and they should be part of those conversations and discussions.
Kim Leadbeater
Q
Dr Ahmedzai: Clearly, British people have had that option for many years, since Switzerland first offered that. It is clear that two things happen. One is that it selects people who are better off and more functionally capable—they can do it—so it discriminates against disabled people. Also, people tend to do it long before they need to, when they are still fit. That is because mostly, they want to go on their own, without dragging relatives along. It is doubly damaging to families who are going through an illness with somebody who is dying. They have to say goodbye to them long before they need to. However, that is because we do not offer that option here.
Kim Leadbeater
Does anybody else want to comment? Dr Cox?
Dr Cox: I am happy to. Of course we do not want people to have to make that choice. I will refer to everything I have said before: are they are making a real choice, and have they had access to really excellent palliative care?
I also make a brief point about the impact of the discussion around what dying looks like that the Bill has raised, and the fact that the stories that have been told have suggested to many members of the public that death is inevitably ugly, horrific and dramatic. Actually, that has made many people fearful, and they have been emailing me and saying, “I am now afraid of dying, and I wasn’t before.” They may then choose assisted dying before they need to because they have had a fear instilled in them that death is inevitably horrible and dramatic.
The Chair
Order. That brings us to the end of the time allotted to the Committee to ask questions. I thank our witnesses on behalf of the Committee for their evidence.
Examination of Witnesses
Sir Max Hill KC, Alex Ruck Keene KC and Sir Nicholas Mostyn gave evidence.
The Chair
Q
Sir Max Hill: Good afternoon. I am not sure how much by way of introduction you want, so please stop me. I was the UK independent reviewer of terrorism legislation 2017-18, and the director of public prosecutions 2018 to 2023—so I stopped 15 months ago. I am not a campaigner; I am here to bring any experience of criminal casework that I may have picked up along the way, as that was part of my diet as DPP. I have been quite close to the construction of the Bill, and I am happy to deal with any questions that I can.
Sir Nicholas Mostyn: I am Nicholas Mostyn, and I was a judge of the High Court family division, of the Court of Protection and of the administrative court until 2023, when I retired with the onset of Parkinson’s disease—which is a genuine slippery slope, unfortunately. I am now a podcaster and devoting myself to alleviating the hardships of people living with Parkinson’s.
Alex Ruck Keene: I am Alex Ruck Keene. I am a barrister in independent practice, and I need to emphasise that I am giving my evidence as a self-employed barrister, not on behalf of any organisation I am associated with. You will have seen from my written evidence that I am associated with quite a few different organisations, because my practice and career straddles both advising and appearing in court cases involving mental capacity. I teach law on the end of life as a professor of practice at King’s College London. I am also heavily involved in law reform in different ways; for instance, I was the legal adviser to the Independent Review of the Mental Health Act 1983. I also do an awful lot of training in the context of mental capacity of both healthcare and social care professionals.
Naz Shah
Q
Sir Max Hill: If the problem is anybody in future going on their own or accompanied by their loved ones to Dignitas, the answer is no—this Bill does not satisfy that. What we have learned from other jurisdictions around the world, where we see broader or multiple groups beyond the terminally ill who are entitled to use new legislation, has not been the model for this legislation, unless you and Parliament were to dramatically change it. The nuanced answer to your question is that this Bill does provide an opportunity for those in the category of being terminally ill, as defined in the Bill, to no longer have to resort, on their own or supported by loved ones, to going to Dignitas. So, yes, it can and will make a positive difference.
I should add, in answering this question, that my often-quoted personal experience is that 27 cases investigated as assisted suicide came across my own desk as the DPP —five to six cases a year. A substantial proportion of those cases did involve Dignitas, because an accompanying relative who had returned alone was then investigated, but a proportion did not involve Dignitas at all, because there had been deaths at home. Of all those 27 cases, I made the decision to prosecute in only one, which was the case of an individual who was 19 years of age encouraging another teenager to end their life. That was a correct and successful prosecution.
I will also add—because until 15 months ago I was a prosecutor, and prosecutors look to bring criminal cases whenever the law is broken—that there was an additional handful of cases in which, although I was not making the personal decision, I supported authorisation of charges for murder or manslaughter where it was clear that an individual’s life had been brought to an end not at the time of their choosing. It is perhaps important to remember that this Bill, as and when passed—that is a matter for Parliament—would not truncate the homicide jurisdiction in this country. It will still be possible to prosecute for murder in those cases when one would expect to be prosecuted for murder. I think it is important to say that, as a very recent former prosecutor.
Naz Shah
Q
Sir Max Hill: That small handful of cases involved an elderly couple where either he—it was usually a he—or she had chosen to bring to an end the life of their lifelong partner and, once that act had been carried out, claimed that it was an assisted suicide in circumstances where the surviving partner was merely carrying out the wish of the person now dead. There are a handful of cases in which that is clearly wrong and should not be accepted and where murder should be the offence brought before the court.
The point, though, is that throughout the time that I served as DPP—and, indeed, the time served by all my predecessors—we did not have the coercion offences created by the Bill, which I suggest would be a significant advance, and nor did we have a legal system in which the investigation was taking place before the death. It was the other way around. In each of the 27 cases I considered, the deceased individual was already dead, and that is when the scrutiny started. The major advantage of the Bill, if I can put it that way, is that that will be reversed, and scrutiny will be before death. In the case of coercion, where it fits the new potential clauses, prosecutions can—and, I am sure, will—be brought.
Dr Tidball
Q
Sir Max Hill: I think that coercion and the coercion clauses in the Bill should be read alongside the capacity clauses. What we are looking for, as required by clause 1(1) and clause 1(2), is a clear, settled and informed wish, voluntarily made without coercion or pressure. Those aspects were taken, at least in part, from the Crown Prosecution Service guidance on 1961 Act cases. Capacity involves understanding information, retaining it, using it and communicating it. If those hallmarks are not there, you may be in a situation where you should be considering coercion. I think you read the two together.
To answer your question directly, the criminal liability clauses—clause 24, and the new offences in clauses 26 and 27—are robust. As a matter for your scrutiny, they are aspects that we do not have in the law at present. There is, of course, the addition of clause 36, under which you cannot be a witness or a proxy to the procedure that is enshrined in the Bill if you are too close to the terminally ill person. That is another hallmark of the Bill that will hedge against coercion.
Dr Tidball
Q
Sir Max Hill: My inclination is that clause 26, which is part of the full body of the Bill, is the right place for this. As with the interpretation clause, clause 40, and as with the way we interpret statute as a matter of course, there are aspects of other statutory offences or Acts of Parliament that help us when we are seeking to determine what coercion is. The creation of the offence of coercion and control, now very commonly used in domestic abuse investigations and prosecutions, has brought us into this territory. It is not beyond the wit of anybody who seeks to use and interpret this Bill to also look for other parts of statute that deal with coercion.
I make the same point about capacity. What is in the Bill is very slender, one might say, because clause 3 simply invites the reader to look across to the Mental Capacity Act 2005. But that Act is very clear on what mental capacity is and how it is defined. I think what I am saying is that it is a drafting point, and I am not a parliamentary draftsman, but I do not have a problem with the definitions of dishonesty, coercion and pressure being in clause 26, where they are. It is not the only place one would look, though; there are other sources.
Dr Tidball
Q
Sir Max Hill: “Dishonesty” is a term of art in common use, but it is also a term of statute. Anyone investigating or, still more, prosecuting would understand what dishonesty means. I accept that there is a wider point—not so much for interpretation but for understanding—that this Committee may want to consider, of how much of that existing definition needs to be imported into the Bill. As with mental capacity, I would suggest that, beyond perhaps the odd footnote, it is not necessary for you as a Committee to define again what dishonesty means, because we have it elsewhere.
Alex Ruck Keene: On pressure, I think the Committee would be really assisted by having a look at the learning of the High Court judges exercising their jurisdiction under the inherent jurisdiction in relation to people who are said to be vulnerable. They have developed an awful lot of tools, where they are trying to look at people in complicated situations—potentially, but not necessarily, with impairments—who are caught up in what one person brilliantly described as being caught in a spider’s web. Those are the sorts of sets of tools used when judges are trying to work out what is going on, and whether it is the side of the line we consider to be acceptable or the side of the line we consider unacceptable—because “pressure” is doing a lot of work there.
Jake Richards (Rother Valley) (Lab)
Q
Sir Nicholas Mostyn: One per cent would be 6,000 deaths a year. If each took two hours to process in the High Court—you have to read it and hear the evidence; one of them has to be oral and you have to write a judgment—that is 12,000 hours. Each High Court judge does 1,000 hours in court—outside court, they do lots—so you are talking about nearly three quarters of the entire family division doing nothing but this. It is impossible, in my opinion, for this to be done by the High Court. It should be done in the Spanish way by a panel that is set up. In Spain, the chairperson of the regulator sets up a panel for each case—a doctor and a lawyer. They have to agree and they check that everything has been done lawfully. They do not make any value judgment about whether it is in the person’s best interest. They check that it has all been lawfully.
Interestingly, in 2023, 10% extra denials were done by the panel. I do not know whether that was because they were concerned about voluntariness or whether they were concerned about suffering—because the criterion is suffering there—but an extra 10% was done by the panel, so the panel was not just rubber-stamping. They denied an extra 10%. I believe that an ad hoc system like that, with a doctor and a lawyer doing a check, would be the best way of doing it. The High Court—trust me, I’ve just come from there—has not got the capacity to deal with 6,000 cases of this nature.
Jake Richards
Q
Sir Nicholas Mostyn: Can I just answer before he does?
Jake Richards
Yes—it’s just that otherwise I will be cut off. I was trying to get two questions in.
The Chair
Order. I said earlier that this is not a dialogue. Address your comments to the Chair, and I will decide who speaks and when. I do not wish to be rude, but everybody’s got to have their fair share.
Sir Nicholas Mostyn: I do not know if you have seen Sir Stephen Sedley’s memo, which came today. He has suggested that the Official Solicitor should be the checker of these facts, which seems a sensible idea. The Official Solicitor would be able to recruit more staff to do this. It would not be nearly as expensive as High Court judges, and it would be an efficient way of dealing with the problem. The advantage of the Spanish system is that you have a qualified doctor as well as a lawyer doing the checking. Remember—a High Court judge is not going to be a qualified doctor. That is a significant advantage in my opinion.
Danny Kruger
Q
Sir Max Hill: I am not sure about that. I would always default to the code for Crown prosecutors and the two tests that the prosecution must go through, regardless of the crime that is being investigated. The evidential stage test sets out what it is necessary to be able to prove—some people say to a reasonable level—to afford a reasonable prospect of conviction. One can well imagine that, in Dignitas cases, that hurdle or test is often satisfied. It was often satisfied in the cases that I considered, and could often be satisfied in the future, but the evidential stage test being satisfied does not always mean that a prosecution results. That is because prosecutors must then go to the public interest stage and consider the non-exhaustive list of factors that are set out in the public interest stage test together with other policy, which, in this area of law, has developed since the legal case of Purdy in 2009.
In common with many other forms of crime, there are some legal policy considerations that a prosecutor is entitled to consider. They start at the very obvious—for example, what is the age of the suspect? Here, one is not thinking about the deceased who has gone to Dignitas. What is the age of the suspect? What are their characteristics? Have they ever committed a criminal offence before? What is their proximity to the case? What motivation did they have, emotional or otherwise, to lend assistance that technically means they have committed the offence?
I am going through that because, as I said, a proportion of the cases I considered were Dignitas cases, and it was often at the public interest stage that I determined that a public prosecution was not necessary. That is because, after full investigation, it transpired that the surviving relative had acted wholly out of compassion and, may I say, love for the deceased and was not seeking any gain for themselves—far from there being any dishonesty before or after the fact. That would still remain the case. It does not follow that, were this Bill to pass and were people then to take elderly relatives to Dignitas, they would necessarily face prosecution, but the premise of your question is “Could they?” and the answer to that is yes.
Danny Kruger
Q
Sir Nicholas Mostyn: I do not agree.
Danny Kruger
Q
Sir Nicholas Mostyn: I think it is unlikely. I am sorry for interrupting you. I always used to say, “Don’t interrupt”, so I am sorry about that.
I fear that I will be one of the people, referred to by the lady who asked the first question, who has to go to Dignitas—frankly, I could afford to do that—because the Bill is not ever going to provide an assisted death for me. I will not be graphic about what the advanced stages of Parkinson’s are like, but the medical Members among you will be able to describe what is likely—not definitely; I do not want to say definitely—to await me. I am choosing my words carefully. It is either going to be a poor death here or to go somewhere like Dignitas. If my children took me as far as Calais, and then helped me after Calais—assistance only applies to within the jurisdiction—and drove me on to Zurich, I would be extremely surprised if any prosecution ensued.
Danny Kruger
Q
Alex Ruck Keene: I think there are two different questions. First, is any idea of capacity sufficient at all? I think that is an existential question that I am just going to park. Turning to the Mental Capacity Act itself, it is important to understand that there are three different bits of that Act in play. We have a set of principles: the presumption of capacity; the presumption that you have to provide all practicable support before you find someone to lack capacity; and the idea that you cannot, just because a decision seems unwise, say that someone lacks capacity. Then we have a functional aspect—in other words, can you understand, can you retain, can you use and weigh the relevant information, and can you communicate that decision? We also have what some people call the diagnostic element—in other words, is there an impairment or disturbance in the functioning of the mind or brain?
These are the three separate things, all of which we make work—more or less—in everyday practice. I say “more or less”, because yesterday I was on the advisory group for a project funded by the National Institute for Health and Care Research, which was funded in 2022 to try and increase the quality of mental capacity assessments in healthcare settings. We need to be under no illusions about how well we are doing it at the moment, but we make it work, more or less.
The Mental Capacity Act works more or less in the healthcare context, because every time we reach the view that someone cannot make a decision, we have an alternative—we can think about best interests. What we are asking the idea of mental capacity to do here is different, because there is no suggestion that, if you cannot support someone to make a decision, you will ever make a best interest decision in their name to assist death. It is also not obvious that the idea of a presumption of capacity should apply. If I doubt that you have capacity to make the decision to take your own life, or end your life, but I cannot prove it, is it logical or are we required to proceed on the basis that you do? Also, it is not immediately obvious that it is right that the diagnostic test applies in this context. In other words, I think you cannot understand the information, but I cannot prove the reason that you cannot understand it is that you have an impairment or disturbance. That is where my concern came in when I was explaining it in my written evidence.
I want to be absolutely and totally crystal clear: as far as I am concerned, at this stage, this is policy development. I am so glad that evidence is being taken and the public is thinking about this, but a Bill of this nature needs to be drafted by the Office of the Parliamentary Counsel. I am really trying to get across the policy line, which to me is about what doctors need to be interrogating—or anyone else, as I would love it if other people were involved—is, can the person understand the information? Can they retain it? Can they use and weigh it? Can they communicate their decision? If they cannot, we do not need to start mucking around with, “Why not?” It is just that they cannot, and that is the central idea of capacity. It is the functional idea, but it is tooled for use in the Bill rather than, as it stands at the moment, just being cross-referred out to the Mental Capacity Act, raising a whole series of additional complexities.
My only other observation is that I spend an awful lot of my life trying to improve Mental Capacity Act practice more broadly. I would be massively concerned were a knock-on effect of the Bill’s seeking to deal with a very specific group of people to be that it starts inadvertently—it would be inadvertent—interfering with how we think about healthcare decision making more broadly in the context of those people with impaired decision-making capacity. It is an insulation point, a making sure you have the right tools for the job point, and a not having a knock-on effect on thinking about things more broadly point. Sorry for the long answer.
The Chair
I will move on to Sojan Joseph, but perhaps you can pick this up. We have eight people wanting to ask questions and half an hour, tops.
Sojan Joseph (Ashford) (Lab)
Q
Alex Ruck Keene: I think for many reasons it can. On the pure capacity side, this is, at one level, an existential question. This is not a healthcare decision but an existential decision. The more people we have who are able to bring their different perspectives—the social work perspective on the person’s social circumstances or the medical perspective on their medical condition—the better, so that we have as many eyes on the person and insights into the person as possible.
It is about trying to make sure that the decision goes back to whether we are really satisfied that the criteria set out at the beginning of the Bill are met. I personally think we should have MDTs, for instance, as you would have in a Mental Health Act detention, so that we have more than one pair of eyes on it from more than one discipline.
Jack Abbott
Q
Sir Nicholas Mostyn: I was sort of taken by surprise when she asked the me the question in the pub, and I would not have phrased it like that in court 50.
Jack Abbott
Q
Sir Nicholas Mostyn: Parkinson’s is such a complex condition. The medically qualified amongst you will know this—there are so many symptoms, and with the rate of development and the direction of travel, it is an enormously complex condition to know. That is why it is commonly accepted that you do not die from Parkinson’s, you die with Parkinson’s, and it is almost impossible to give a mortality rate as to when that is likely to happen—almost impossible.
When I was doing my research, I was slightly surprised to see that last year 6,000 death certificates had Parkinson’s written on them. They do say that the experts in Parkinson’s are the people with it, but the people you talk to are quite clear that it is impossible to predict and it is a really complex thing. That is why this arbitrary—I use the word technically—six-month period is a problem. If a doctor opines conscientiously and honestly, unless the Parkinson’s patient has already developed pneumonia, sepsis or something of that nature, or complications from falls—the common reasons for death—you will never get that six-month ticket. That is the thing; that is the problem.
Jack Abbott
Q
Sir Nicholas Mostyn: Neurodegenerative.
Jack Abbott
Yes, those with such conditions. Are they left out of this debate?
Sir Nicholas Mostyn: They are.
Jack Abbott
Q
Sir Nicholas Mostyn: It has been suggested that I want to expand the definition of terminal illness. I do not want to expand it. I want to redefine it so that it is more appropriately focused, in my opinion, on what this Bill should be about, which is the relief of suffering. That is what I believe the Bill should be about. You should get the permission to have an assisted death if you are suffering intolerably within five months of death or seven months of death—there should not be this arbitrary line.
Moreover, it should not be open to people who are not suffering, but who happen to have a six-month life expectancy. There are probably quite a few of them, for one reason or another, whose life expectancy is short, but their pain is well-managed. I do not believe that assisted dying should necessarily be available for them. I do believe very strongly—this is not an expansion, but in my view, a more appropriate focused redefinition of terminal illness—that it should be, as in Spain and in Holland, focused on suffering.
Rebecca Paul
Q
My second question, which is completely different—just to mix it up—is on a really interesting point in your written statement about how we need to give consideration to the national suicide prevention strategy. I found that really interesting, because the Bill potentially turns on its head the way we view suicide, and obviously we have been sending a certain message out there, particularly to our young people. Could you elaborate on the point you were making in your written evidence to the Committee?
Alex Ruck Keene: Gosh—yes. There is absolutely no way that you can stop people trying to challenge whatever Act is passed; there is no way you can stop people seeking to challenge that under the ECHR. We then get into this enormous argument about whether it is inevitably discriminatory. Courts to date have been very clear: “We are not going to get into this; it is for Parliament to decide whether to make assisted dying legal.” Once it is made legal for some people, but not for others, there is a difference in treatment. Whether it is discriminatory, and therefore contrary to articles 8 and 14 of the EHCR, depends on whether that difference is justified.
I am trying to be very careful in my language, because I try to do that. The Bill Committee and Parliament need to be very clear how, if you are going to limit this to a cohort of people—I feel acutely conscious that I am sitting next to somebody who would be excluded—it could be explained to somebody that they are not eligible and that there is a difference in treatment but it is perfectly justified. If you cannot do that, it will be discrimination.
The courts have been very clear that you do not have to have a system, but if you are going to have one—for example for social security benefits—then you need to have one that is non-discriminatory. That is the answer I can give to that. The one thing I can say is that you cannot stop lawyers trying to challenge. That is what they will do.
Sir Nicholas Mostyn: All laws discriminate; 69 mph is not an offence but 71 mph is. All laws discriminate. The question is whether it is justifiable.
Sir Max Hill: It is also a question of providing legal certainty, which is why the definitions in the Bill are so important. Provided that it is articulated clearly and within what the European Court so often calls the margin of appreciation, which it gives to sovereign states, then although I agree with Alex that a challenge may be possible, I cannot see a successful challenge to the Bill if it is drawn with the sorts of provisions we have here. Indeed, we have not seen local nation state examples of this sort being struck down by the European Court elsewhere in Europe, so I think it is very unlikely that we would see such a strike-down here.
Alex Ruck Keene: I really hate to get into it with such eminent lawyers, but there has not been a case in Strasbourg seeking to say that a limited class of case is discriminatory, so we just do not know.
Sir Nicholas Mostyn: I agree with that. I have changed my mind twice about this subject.
Alex Ruck Keene: Do you mind if I quickly touch on something else?
Daniel Francis
Q
Alex Ruck Keene: I should make it absolutely clear that all I am trying to do is make sure that whatever law is passed is a good law and has as few inadvertent consequences as possible. My concern here arises out of the fact that understandably the proponents of the Bill want to make it very, very clear that this is about people carrying out a final act, and no doctor is allowed to do something that involves going beyond that. At the same time we have a situation where doctors—I am using the word “doctor” slightly loosely, but for present purposes that is what we are talking about—have to be present and have to remain with the person. We know that there will be some people for whom there are complications.
My concern is to make sure that there has been sufficient consideration given to what exactly a doctor is meant to do at that point, because it seems to me that it ends up putting the person who is undergoing those complications in a horrible position. It is also—I am perfectly happy to use this phrase—putting the doctor in a position of extraordinary moral distress. Are they at that point supposed to try and rely on the doctrine of double effect and say, “All I am trying to do is treat the complication, not bring about your death,” but the Bill is saying, “No, you are not allowed to do that”? I understand entirely why the intention is to say that the doctor must always be hands off, as it were, but you need to super clear that you are going to put some people in some very, very difficult positions, and Parliament needs to be clear-eyed about that.
Dr Shastri-Hurst
Q
Sir Max Hill: I would not look at it on grounds of discrimination. What I would do is put that clause alongside what are generally referred to as the slippery slope arguments in other jurisdictions. In other jurisdictions—Canada might be one and some of the US states might be another—the provision of life-ending medication is expressed in a form of treatment by a doctor. This is not that. We are clear when reading clause 18 that it is not a permission to administer; in fact, it is a prohibition on administration. It is making available in certain tightly defined circumstances and then standing by—not necessarily in the same room, as stated in subsection (10)—while the self-administered medication takes effect.
Having said that, I am absolutely clear that there is only so far a Bill or Act of Parliament can go as primary legislation. There is then further distance that must be covered by the provision of practical and professional rules, under the auspices of the national health service here, to indicate precisely the circumstances in which this will physically happen. I do not see that as discriminatory; we are dealing with a tight category of defined individuals to whom this applies and it does not apply to anybody outside that, as we have just discussed. But it is not prone to the slippery slope arguments of something that is generally to be made available in the course of treatment. In fact, the Bill has been couched in a very different way.
Dr Shastri-Hurst
Q
Sir Nicholas Mostyn: I did. What particular aspect do you want me to address? The range is quite wide. In relation to the administration of the substance, it is interesting that in Spain, which is now in its second full year of doing this, take-up has been extremely low. There have been only 700 requests, with a quarter denied, and a quarter of the people died prematurely. Three hundred were granted, but of those 300, in 95% of cases the substance was administered by the doctor and auto-administered in only 5%. I am trying to work out why that is, culturally, in Spain. Maybe people go when they are extremely infirm, and that is the reason for it. I am not able to see the moral distinction between having the substance administered and auto-administration. On your question, there are devices that enable somebody who is locked in to end their lives by a blink of the eyelash, aren’t there?
Sir Max Hill: Yes.
Lewis Atkinson
Q
Sir Max Hill: I would say two things. First, it bears weight that, looking at all the provisions in the Bill, the additional level of scrutiny currently being called judicial scrutiny or approval is absent in all the comparative examples around the world. That already makes this a tighter pre-legislative model than we see in other countries that have gone down this route. That is worth remembering.
Secondly, while I am not a family lawyer—I was, but a very long time ago—I think that the family division of the High Court would be very well-placed to perform the sort of exercise enshrined in current drafting, which is not a rubber-stamping exercise, but a substantive consideration of heavily objective medical opinion arrived at by not one, but two doctors, one of whom is not the treating doctor.
I listen to and accept the question of pressure on the justice system generally. That is something the Committee will be concerned about because, if the Bill passes, we want something workable. I heed what Sir James Munby said. The sitting judiciary, for good constitutional reasons, is highly unlikely to say anything. But there is therefore merit in looking at clause 12, under the heading, “Court approval”, and performing quite a simple exercise, which for me would be going through subsections (1) to (6) inclusive and, where it says “High Court”, replace that with something else. Personally, I have an aversion to the word “tribunal”, which indicates a right and wrong or some kind of fault-based system—that is not what we are talking about here. But a panel, as Nick said, is the way to go—
Sir Nicholas Mostyn: A panel appointed by the Official Solicitor.
Sir Max Hill: Whether appointed by the Official Solicitor or not. Dare I say it—because I am sitting next to a very distinguished one—I do wonder about the recently retired members of the judiciary and the role that they could play under a replacement panel system.
Sir Nicholas Mostyn: That is what I had in mind—the Official Solicitor looking at the retired judges.
Sir Max Hill: Yes, so there is legal professional capacity among the retired judges—not that they would sit alone on a panel. It would bring with it the extra benefit of having suitably qualified medical professionals, like the Spanish model. So yes, I think that could be done. That is not the same thing as saying that the High Court approval model is fatally flawed and could not be introduced, but I do think there is a viable alternative, which is worth looking at.
Alex Ruck Keene: I have only one observation, and I said this in my written evidence but I also want to say it out loud. You have to think very carefully about what purpose any form of this oversight is actually serving societally, if the oversight panel, whether that be a judge or a panel, cannot decline to approve an application if it considers that the reason the individual is seeking assistance in dying is because of service provision failures by the statutory bodies responsible for meeting their health and social care needs. That is a question of principle, and I want to make sure that that is squarely before you.
Liz Saville Roberts (Dwyfor Meirionnydd) (PC)
Q
Alex Ruck Keene: We have capacity, but we also have to make sure that it is settled, informed and voluntary, and that we do not have things like pressure or influence going on. It is important to make it clear that we are not just saying that this is about all the weight going on capacity. For instance, if you have social workers involved—if you have, say, palliative care social workers involved, assuming it is a palliative care situation—they are going to be far better informed about what options might be out there than a doctor, potentially, depending on the doctor. Social workers more generally might well have more expertise in picking up signs of coercion or influence than a doctor, but I do not necessarily want to get into, “Some disciplines are good at X” and “Some disciplines are good at Y”—I have come across brilliant examples and bad examples in both zones.
It is partly about multidisciplinariness and also about the fact that you have more than one person trying to talk it through. When I train, I always try to tell people that 85% of capacity assessments are not all that difficult —they are just made difficult because you do not have time or you are not listening—but 15% are more difficult. I think a lot of these will be in the 15% zone, and in that zone, the more people you can have thinking about it, so long as they have an agreed framework within which to think, the more reliable, transparent and accountable the outcome is going to be.
The Minister of State, Ministry of Justice (Sarah Sackman)
Q
Sir Nicholas Mostyn: The former.
Sarah Sackman
Q
Sir Nicholas Mostyn: It will have the statements in schedules 1 to 4, signed by both doctors twice. This is where it gets slightly tricky. Is the panel expected to be a ferret and say, “This does not quite chime for me”? The Committee will have to consider how investigative the panel will be, or whether it will purely sit back, be passive and work on the material it has. Of course, under clause 12, it has to hear orally. That might get the alarm bells going, but I believe that the panel should be entitled to call for further evidence if it has concerns. As I say, I have been trying to find out why 10% of cases were rejected by the panel in Spain. There must have been some kind of procurement of further evidence by the panel in order to do that.
Sarah Sackman
Q
Sir Nicholas Mostyn: Article 10 of the Spanish law gives an appeal on a point of law to their high court, so I would have the same, with an appeal on a point of law to the High Court, but only on a point of law.
Alex Ruck Keene: Either way—it would have to be either way. It could not just be against a decision not to approve, logically, because the current model is very odd in saying that you can only appeal one way to the High Court.
Sir Nicholas Mostyn: Yes. Spain gives either side the right to appeal, so I agree with that, but it is confined to a point of law.
Sir Max Hill: I would only add that I wonder whether that is the only route through, namely leaving open a judicial review appellate process, or whether, for example, as we imagine with a number of commissioner-led processes already in this jurisdiction, the panel—or frankly, I suspect, panels, which might sit regionally, chaired perhaps by the retired judiciary—would have an appellate route to a national body, which you could call a national commission, instead of a judicial-review route to the Court.
There are a large number of commissioners, some sitting under the Home Office and some sitting under the Ministry of Justice—in a sense, I was a commissioner when I was the independent reviewer of terrorism legislation—with closely defined powers. There are many others who sit in an enhanced regulatory position—highly qualified individuals. You could describe them as national commissioners, if that is an appropriate term, and they would have superintendence over regional panels, and the power to appoint retired judiciary, perhaps with the assistance of the Official Solicitor, to sit on those regional panels, and then to have an internal appellate mechanism.
Sir Nicholas Mostyn: You have to have an appeals process of some type, because otherwise there will be judicial review. If there is no appeal, there is judicial review—so you have to have an appeal of some type or there will be judicial review.
Sir Max Hill: Yes, I agree.
The Chair
We have some Members who want to ask more questions; we have about six minutes or so. Jake Richards, you did have a possible question earlier on.
Jake Richards
Q
Sir Nicholas Mostyn: Relations who say, for example, “My father has been pressured by his new wife to do this”. If a father has given permission and the child has asked to intervene, there would be some process where the child would be allowed to become a party to the proceedings, because that will have to be specified in rules, and that person would then be the appellant.
Jake Richards
Q
Sir Nicholas Mostyn: Well, it does.
Jake Richards
It is an autonomous decision, so—
Sir Nicholas Mostyn: No, but it says, procedurally, they can determine their own procedure.
The Chair
Order. I am giving you an opportunity to ask a question, so ask the question, we will get the answer back and then we can move on. I do not want this dialogue, I am afraid.
Jake Richards
Forgive me, Mr Dowd. I meant that, in terms of the assisted dying process in the Bill, there is no automated mechanism for family members, or indeed any third parties, apart from the doctors, to have notice of this intention. Is there a concern, regarding this appeal point, that perhaps interested parties would not know?
Sir Max Hill: I would suggest that the key to this is in clause 12(5), and that is why I have recommended just striking out the words “High Court” and putting in the word “panel”, and then reading the whole of clause 12 as amended, with those situations in which there are steps that “must” be taken—and there are many—and those in which there are steps that “may” be taken.
In clause 12(5), following that logic, we would imagine that a panel, just as the High Court,
“may hear from and question, in person, the person who made the application”
but
“must hear from…the coordinating doctor”.
The appellate mechanism, which I agree there needs to be, will be looking sharply at the operation of that subsection. In other words, when the panel made its decision to refuse, on what basis did it make that decision and from whom had it heard? We can well imagine situations in which a co-ordinating doctor, having taken his or her own steps to ascertain the views of the nearest and dearest, would satisfy the panel as to what the views of the family are. The reverse of that is that there is no indication here that, having gone all the way through the panel, the family would have been made aware or considered at all. I think that that will be a rare scenario, but I am not a medical professional. I think you can cover that, perhaps with some changes here or there on what you impose on the panel as a mandatory duty and what you leave by way of discretion, subject to the rules of procedure that the panel would then adopt.
Dr Tidball
Q
Alex Ruck Keene: This is, for the moment, predicated on the fact that we are still in the High Court, as opposed to slightly making up policy on the fly about a panel. Assuming it is the High Court, it seems to me the Court has to be discharging a properly inquisitorial jurisdiction, which means it has to be armed with the tools to do that, which includes arming it with the tools to call for its own evidence. It also seems to me that the High Court would have to be armed with its own ability to not just receive evidence from one side and have someone testing it. That then brings you to the only player in town who could possibly do that, which would be the Official Solicitor as advocate to the Court.
I do not want to emphasise too much the question of resources, because if Parliament thinks this is sufficiently important, the resources will be voted through. But it is vitally important to note that the Official Solicitor is completely overloaded, and we would be asking the Official Solicitor to act as advocate to the Court in every single one of these cases. You could not have it be optional; you cannot say that it is some and not others. If it is going to be inquisitorial, the High Court has to have the ability to say, “This is one-sided; someone needs to tease it out,” so the Official Solicitor would have to be funded to be advocate to the Court and, if necessary, instruct lawyers in every single case.
Sir Max Hill: The model that I was espousing would not necessarily involve the Official Solicitor at all. It would make no draw on the administration of the Court or any officer of the Court, still less full-time judges. It would allow the appointment of recently retired judges, as we have in a number of scenarios—surveillance commissioners, for example—and a fresh administration. With that, as with the High Court model at the moment, there is the primary set of provisions, which Parliament must impose, and it is important that that is sufficient for what Alex called an inquisitorial function. Those are in part mandatory—those things that the panel must be satisfied about, which are set out in clause 12(3). Then there are those that are discretionary, which are set out in clause 12(5).
What sits between the two is very important. That is currently expressed as “Rules of Court”, but it would be the rules of the panel, or the commission that appoints the panels. In a court scenario, we are all familiar with criminal procedure rules and civil procedure rules; that is the secondary stage that is reached once the primary legislation has been fixed. That, too, would apply to the commission or panel process, but I do not necessarily think that it would involve using existing, paid judicial resources at all.
The Chair
We have one and a half minutes, so it will be a 10-second question and a 20-second answer; unless you can do that, I am going to call it to a close.
Dr Opher
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”.
The Chair
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.
Sarah Olney
On a point of order, Mr Dowd. I had my hand up at the beginning. I was really keen to ask a question in this session because it is pertinent to an amendment that I have tabled. Could you advise how best I can have the opportunity to ask my question?
The Chair
I am more than happy to speak to you afterwards. We have had lots of questions today and I tried to get people in as much as possible, but there has to be an element of self-discipline from the people asking the questions and interrupting. I am happy to facilitate if I possibly can, but I am afraid that there is also a responsibility on Members to look to other Members’ needs.
Examination of Witnesses
Dr Ryan Spielvogel and Dr Jessica Kaan gave evidence.
The Chair
We will now hear oral evidence from Dr Ryan Spielvogel, who is senior medical director for aid in dying services at Sutter Health, California, and Dr Jessica Kaan, who is medical director for End of Life Washington. Both witnesses will appear via Zoom. I call on Members to ask questions, but in view of the last point of order, I must be absolutely clear that I will interrupt if questions to the witnesses are too long. We do not have much time and people want to get their questions in—there has to be an element of self-discipline in that regard.
Kim Leadbeater
Q
Dr Spielvogel: Thank you all for having me today. I am Ryan Spielvogel and I am senior medical director for assisted dying services for Sutter Health in California. I have been an assisted dying physician for the past eight and a half years, since the law went into effect here, so I have seen many terminally ill people going through the process.
You asked specifically about coercion and capacity. Determining mental capacity is something that we use physicians to do every day. There are codified steps and processes for us to be able to assess a person’s capacity. Capacity for anything, for any procedure or medical intervention, is presumed—that the patient has capacity—until they are deemed to not have capacity. We do that through asking questions, determining their understanding of their disease process, asking them to repeat what their understanding of their options is, and making a decision and then telling us their judgment as to why they came to that decision.
That is something that we do every day. It is oftentimes informal. For instance, if I am prescribing someone blood pressure medication, I might not go through the entire process of assessing capacity, but in longer or higher-stakes conversations like end-of-life discussions, I usually do ask somebody to repeat back to me what they understand of their disease process, their options, what their decisions are and why they are making those decisions. That is basically exactly what I do in these conversations.
In terms of coercion, I understand the concern. It is a very valid concern that people have. I have seen this in many jurisdictions in the US, where different states are considering legalising assisted dying, but I will tell you that in practice it just does not happen. I have seen assisted dying laws go into practice across numerous states and have helped many, many people through this process, and I have never seen a case where I even suspected coercion. People are just not that good as actors.
So we get the family out of the room. We dig deep into their concerns, their justifications and the reasoning behind their choices. It is often crystal clear, when you are speaking to someone who is suffering from a terminal illness. They are very focused on their symptoms, very focused on their quality of life, very focused on their suffering. I do not ever get the sense from them that their family, their doctors or anybody is coercing them into the decision. In fact, if anything, I have seen it many times the other way around. I tend to see it where the patient is really ready to let go, but the family is really not ready to let go, and the family puts up varying degrees of roadblock to the patient accessing assisted dying. I have seen many cases of people being coerced out of it; I have never seen someone being coerced into it.
Kim Leadbeater
Q
Dr Kaan: I echo exactly what Dr Spielvogel has said. As part of our medical training, we are trained to assess capacity in both small and big ways, depending on the size of the decision at hand, as he said. Throughout our medical training, we are trained to do that and to assess with a patient progressively over time, as we are seeing them in subsequent visits as well. This is really no different from that, although obviously the stakes are a bit higher than a blood pressure medication discussion.
We look at whether, for instance, the patient is able to voice a reason for making their decision. Do they have a logic behind it? Do they have a set of values that they can express? Is their decision consistent over time? We are looking at a longitudinal assessment, rather than just one fixed moment in time. Over the course of our assessments, it really does become clear in almost all cases that somebody either does or does not have the capacity to make this decision or any decision. This is really not outside the realm of what physicians are trained to do in any other case of medical decisions, especially large ones.
In the case of coercion, I agree that virtually all the time it is the opposite way: family members and loved ones are well-intentionedly trying to coerce or convince someone not to make this choice or not to proceed with this option, which they may have available, rather than pushing them to do it. I think the way to properly assess that is to ask open-ended questions: as Dr Spielvogel has said, to have them in the room alone, at least for a portion of the assessment, so you can have a one-on-one conversation; to ask the questions in various ways, so you are seeing the consistency of answers over time; and to look for non-verbal cues that may indicate that something else is going on. I have also never come across a case where I felt that a patient was being coerced into this decision by a family member, but rather the opposite.
Bambos Charalambous (Southgate and Wood Green) (Lab)
Q
Dr Spielvogel: The original version was called the End of Life Option Act. It legalised assisted dying in California when it went into effect in 2016. It was then amended in 2021, I believe; the effect of the main amendment was to shorten the waiting period. There was a 14-day mandatory waiting period between two verbal requests that a patient would give directly to their physician. What we found when we were studying it was that approximately 30% of people died during the waiting period.
There were many conversations with patients. The thought process behind the waiting period is that somebody is making a persistent, well-thought-out and non-capricious decision when they are asking for this, but there is a false premise there—[Interruption.]
The Chair
We were in the middle of your reply, Dr Spielvogel. Could you pick up where you left off?
Dr Spielvogel: I will make it brief. I was saying that it is an erroneous assumption that people start thinking about assisted dying the first day that they give their first verbal request. In reality, people have usually been thinking about it for weeks before that visit. Because of that, we did not see anyone’s decisions really ever change between the first verbal request and the second, 14 days later. That and the fact that 30% of people were dying during the waiting period led us to shorten the waiting period to 48 hours. That is the main change that we have had in our law since it was implemented.
Bambos Charalambous
May I put the same question to Dr Kaan?
Dr Kaan: You will know that throughout the United States there are a variety of aid in dying laws, all of them slightly different across jurisdictions. I practise in both the state of Oregon and the state of Washington, so I have to keep track of two slightly different laws.
In the state of Washington, where I am the medical director for End of Life Washington, we updated our law in 2023, mostly because we were trying to increase access to it for people who lived in rural communities or for people in underserved communities. Any healthcare system in the world right now has experienced a shortage of physicians, so the requirement for two physicians to do the certification was a barrier for people in those communities that did not have access to two physicians. One of the things we did to increase access in 2023 was to make it so that one of the two providers could be a non-physician: a physician assistant or a nurse practitioner with advanced training. One of the providers still needs to be a qualified physician, but that has increased access for those in rural communities and underserved communities. We are very proud of the fact that we have done that. Additionally, we shortened our waiting period for similar reasons, from 15 days down to seven days.
In Oregon, they shortened their waiting period. Well, they still have a 15-day waiting period, which has been stable since the start in 1997, but they also now have a provision whereby, if a patient is expected to die within those 15 days—if they are at the very end of their life and are not expected to be able to survive those 15 days—they can bypass the waiting period. I really like that provision, because there are patients who come very late in their process to this decision. It may not seem like much to us, who are healthy and relatively well, but 15 days for a dying person who is suffering and really wants this option is an incredibly long time.
Tom Gordon
Q
Dr Spielvogel: People often feel that at the end of life, just in general. I think that conscientious people will often think about their family and how their situation is affecting their family and loved ones. That is something that many people go through, so that is something that comes up relatively frequently. It is usually embedded within a laundry list of reasons that people are looking for assisted dying. When people bring it up with me, it is more of a commentary on what they do not like about their dying processes—that they are also feeling like a burden on their family. That is a red flag for me, though: when I ask someone, “Why are you reaching for this?”, and they say, “Well, I am a burden to my family,” it is a red flag for me as a physician.
This goes back to the argument about capacity and coercion, because we are trained professionals who listen for these things. This is not a rubber-stamp evaluation. When we ask people why they are looking for this, we really want to assess their judgment and see what their reasoning is. If they are saying, “I’m suffering intolerably. I’ve tried all the things that palliative care and my regular physician are offered me, but I’m still suffering irrevocably. Also, there is this other piece: I see what this is doing to my family,” that is totally valid. That is something that any of my dying patients might say, whether or not they are seeking an assisted death.
If that is the only reason, that is going to lead me to ask a lot of probing questions. It would be a red flag for me, but it is incredibly rare that something like that would be the only reason. Dying is a very complex process, and people’s thought processes during their own dying are equally complex. There are a lot of things that people think about during that time.
Dr Kaan: I echo Dr Spielvogel. It is common that among the lists of things that people mention as reasons, they may mention not wanting to be a burden on their families or not wanting to put their families through an onerous and prolonged dying process. Obviously, if that is the only thing that they are mentioning, it will definitely get them further discussion and exploration into what is going on and what other resources we can point them to, such as connecting them with social workers and available community resources for helping with caregiving.
However, I hear most commonly that people’s desire to save their families from a prolonged dying process comes from lived experience, where they themselves went through the process with a loved one such as a mother or father: they were caregivers, sometimes for years, and felt that it was a burden on them, although they were happy to do so and it was loving. They have that lived experience and they are looking to save their family from what their experience was. I think it is common that people feel some element of that when they are in a situation where they require heavy caregiving.
I think it also goes back to autonomy. People who are in their right mind and have the capacity to make this decision should have the autonomy to have their reasons and their value systems respected, whether or not we share them or see it in the exact same way.
Jack Abbott
Q
Dr Kaan: The thing I have been reading about that is concerning to me is the court approval that you seem to have written into your law. I heard your discussion this morning about how that might be done and whether it is a committee or the High Court and so on. I think that that is really going to limit access to this, and that makes the process a much lengthier one.
Again, these are people at the end of their life. People are not looking, by and large, to cut off a huge amount of their life; they are looking to shorten their death, not shorten their life. By making people go through a court appeal in addition to two qualified physicians, as well as the waiting period, I think that you are going to limit access for people who desperately want this option. It seems like that might be baked into your law, but I would say that that is a concerning feature to me. I think that you are going to limit access that way.
Dr Spielvogel: Something that it turned out was not in our law, but everyone thought that it was for a few years, and it really limited our practice, was that many people were under the impression that the physician could not bring up assisted dying with the patients, and that the patients had to bring it up themselves. That turned out not to be in our law, but that idea really hampered our ability to take care of patients, so I would strongly recommend that there not be anything like that in your Bill. People cannot make informed decisions for themselves if they do not know what their options are. While this is top of mind for all of you and for the doctors—we all know that this exists—even if this Bill becomes law, the general population is still not going to realise that it is an option.
I eat, sleep and breathe this. I am a primary care physician, and when I am going through the options with patients who are newly diagnosed with a serious life-threatening illness, I say, “Okay, here’s what disease-directed treatment would look like. We can continue with your chemo. Here are some side effects and complications that you might have, and here are the benefits of that. Here’s what palliative care or hospice care would look like.” Then I say, “I don’t know if you know this, but in our state we have this other option for people nearing the end of their lives when they have intolerable suffering. You can ask me to fill a lethal prescription for you to help end your suffering sooner.”
The number of times that people look at me and say, “You can do that? That’s an option here?” is astounding. I would say that nine out of 10 of patients I have conversations with have no idea that that is even legal. If they do not know it is an option, they are never going to ask for it. For physicians to do their jobs properly and deliver care to people, and for people to actually have a choice, physicians need to be able to discuss it with their patients.
Dr Kaan: I will just piggyback on that. I cannot count the number of times I have given a presentation or a talk to communities, and people—usually family members of someone who have died, not using this law—have come up to me afterwards and said, “Thank you for what you said. My loved one was interested in having this information, or wanted to talk to their doctor about it, but their doctor never brought it up, so we weren’t sure if we should be bringing it up.” It is a huge burden to put on patients and their loved ones if they have to bring it up themselves. I would highly caution against any sort of language that requires that, because it is just not fair to them. They are already going through so much and, as Dr Spielvogel said, you cannot have an informed decision-making discussion with a patient if they do not have all the options available for discussion.
The Minister for Care (Stephen Kinnock)
Q
Dr Kaan: That is a really important question, because this is a really important topic in the United States. Our laws are very clear that participation is voluntary, so there is no such mandatory training across medical training in general. It is always voluntary. If a physician or provider wishes to have training, they can seek it out. What is available and the standard of care differ from state to state. Certainly, in the state of Washington, where I am the medical director of the organisation that is most largely involved with this, the bulk of my job is doing training, mentoring and shadowing. There is no exam at the end of that process, but there is certainly shadowing and a feedback process.
I am also heavily involved with the Academy of Aid-in-Dying Medicine, which has been very active in creating professional training. We have a Journal of Aid-in-Dying Medicine, which is a peer-reviewed journal that puts out articles that are relevant to the topic. The Academy of Aid-in-Dying Medicine is now undertaking certification pathways, so each level of provider—social workers, chaplains, physicians and anyone else who might be involved in the aid-in-dying process—will be able to take these certifications. A more uniform education system will be available. We are just at the beginning of creating those, but it is very exciting, and we are very happy to have those out. A lot of resources are out there in the world already, in general, to train providers in how to do this well, and it would be really smart to have something in your Bill that outlines what the training should be, whether you will make it mandatory or voluntary and perhaps some sort of certification pathway.
Stephen Kinnock
Dr Spielvogel, I do not know whether you have anything new to add to that. If not, that is fine.
Dr Spielvogel: Without repeating anything that Dr Kaan said, I was just going to say that in addition to my assisted dying hat, I am also the programme director for the family medicine residency programme, so my main job is actually training young physicians who are becoming what you would call GPs.
We have instituted curricula as part of our residency programme here to train interested physicians in learning how to do assisted dying. We go through a whole process for that, including lectures, them shadowing me and me shadowing them, listening in on their conversations, giving them pointers and walking them through the steps of the process. They then do this with multiple patients through the course of their residency, so when they graduate, they feel confident in being able to offer this care. As with most medical training, this should be included in that part of the training process. All the other things, such as pathways in continuing medical education, are very important for physicians out there in practice who want to start doing this, but really getting this into medical training at its roots is vital for normalising the practice.
Speaking of which, something else I have heard a lot is that this might be distressing to physicians, or that physicians would not want to offer this care. I would like to say that 80% of our residents on our programme opt to receive this training. When we did a study on this of graduates from our programme who were continuing to offer assisted dying, 70% of the surveyed residents said that their assisted dying work was more rewarding to them than the rest of their primary care work—70% said that it was more rewarding.
I want to come back to the notion that physicians would feel burdened or that this would be some sort of psychological negative to physicians practising it, because it is actually quite rewarding work. It has led me to be a better physician to all my patients because it has helped me with having these difficult end-of-life conversations with them. That was a bit of a twofer, sorry—I added that on there.
Danny Kruger
Q
Dr Spielvogel: A lot. I have actually been quite surprised. Everybody is different. This is the whole point: different people have different goals, objectives and values. I have mentioned it to people who say, “No, I would never do that,” and I never bring it up to them again.
The Chair
Order. Do not interrupt the witness, please. Let him finish. You can then come back in with a question.
Danny Kruger
I apologise.
Dr Spielvogel: No problem. To answer your question more directly, I have had several people over the past couple of years who had no idea that it was an option and said, “That’s what I want to do.” They then went through the process with me.
Danny Kruger
Q
Dr Spielvogel: Yes. I think it could be made into a misdemeanour, a felony or whatever the equivalent is over there—sorry, I do not have the terminology. You could make it illegal to interfere with a patient’s right to make this choice. We stopped short of that in our most recent addendum to our law here, but I think that was a lost opportunity.
Danny Kruger
Q
Dr Kaan: You characterised it correctly in that I think that for people who have capacity, and who are making the decision to have this as an option, a part of their reasoning is that they want to save their family from an onerous caregiving experience. I think that is their right and it is part of their value system.
Of course, if that is the only reason, we are going to be exploring that. As Dr Spielvogel has said, that is a red flag. We are going to be exploring that, and exploring whether acceptable alternatives exist and what are the resources that the person may not be aware of. That is always part of the discussion. These discussions are always broad and multifactorial. But I think it is appropriate and okay for somebody to say, “I do not want my family to experience what I myself had to experience when I was caregiving for my elderly parents with dementia.” I have heard that many, many times. I do think people who have capacity should have their autonomy respected, in terms of the values that are driving them to make this decision.
We always want to work towards improving the social support for caregiving that exists in our society. There is certainly a lack of it here in the US, and probably there in the UK as well. Hand in hand with allowing people to make an informed decision about the option of having an assisted death, you should also be a strong advocate for social support and caregiving services at the end of life, because those really are important and needed.
Naz Shah
Q
Dr Spielvogel: That is a good question. I do not know the specific status of the Bill, but I would assume that it has itself undergone an assisted death at this point. That Bill is not really being supported by any of our advocacy groups or, by and large, the physicians who perform assisted dying, because it is, as you mentioned, very broad and not aligned with how we feel standard practice is going and where we would want it to go. That Bill did not receive support from many of us.
Naz Shah
Q
Dr Spielvogel: Can you clarify what you mean about kidney disease and the six-month prognosis, and the interplay with insurance there?
Naz Shah
Q
Dr Spielvogel: That is not factually accurate. When people go on dialysis, they automatically get Medicare, which is our version of the NHS, more or less. That is a national health insurance for people who are 65 and older or who have certain kinds of diseases. When you have end-stage kidney disease and you need dialysis, you automatically get Medicare and you get dialysis for the rest of your life, however long that is. People are often on dialysis for years. It is not that you are on it for six months and then you are off.
Naz Shah
Q
Dr Spielvogel: If you have a six-month prognosis to live, regardless of the condition, that would fall under this. That would make you eligible. That has nothing to do with insurance coverage for your condition. Insurance coverage is completely separate. It is not tied to this. All that prognosis does is to allow the individual to seek this care.
Naz Shah
Q
Dr Spielvogel: No. Insurance does not run out. There is maybe a misunderstanding of how medical insurance works in the US. Medical insurance does not run out. I think we are talking about two different things.
Naz Shah
Q
Dr Spielvogel: No, I actually do not think that you are right. When we are talking about lifesaving interventions such as chemotherapy or dialysis, that is not correct. They are bound by law to cover all things that are medically necessary. They do not say, “You have gotten six months of chemo. We are not paying for any more.” That is not how it works.
Sean Woodcock
Q
We heard from experts earlier about the paucity and lack of provision of care across the country. Certain people can get access to very good care, but too many people struggle to, particularly people of certain ethnic backgrounds, people on low income, and so on. Please correct me if I have misinterpreted your views, but from what you have said so far, it sounds as if you think that exercising the right to assisted dying because there is a paucity of appropriate care in your locality, or because you cannot afford it, is a perfectly legitimate exercise of autonomy, based on the society around you. Would that be a fair assumption of your views?
Dr Kaan: I think that is not an entirely fair representation of what I am saying. Yes, we do need respect for people’s autonomy and the reasons they may come to this choice, but I also think that from what I have heard this morning, it sounds like there is a conception that people choose assisted dying and then they do it. What I see, by and large, is that people want to have this as an option. It is an option among the other options of hospice palliative care or palliative treatments. The availability of this as an option often brings people tremendous relief from their suffering—just from the anxiety over how they might die, or what suffering might be in store.
I had a case of a woman with ALS, or amyotrophic lateral sclerosis. She was very afraid of how she might die with that condition, and she felt like she might suffocate to death. She was so focused on having the option of aid in dying because she was terrified of what might be in store for her. We were able to incorporate her into a hospice that offered comprehensive end-of-life care, including the option of aid in dying. We got her through the process, we had the medications available and she told me how much relief she felt from having it as an option, but ultimately she decided not to use it. She decided that she was getting really good care from her palliative care and hospice teams, and that her symptoms were well controlled. Although she was extremely grateful that she knew the medications were available should she decide to use them, she did not end up needing to use them or wanting to use them.
That is the reality of what is happening in a lot of cases where this is an option among other options. The availability of this option is, in and of itself, a palliative care treatment for many people. On whether or not wanting to avoid being “a burden” to a family member or to a caregiving team is a valid reason to pursue this, yes, I think that is a valid reason among many for people who have a value system that highly orders that.
Dr Spielvogel: I just wanted to add something, if I may. I have heard this argument—or rather, this concern—a few different times, and it strikes me as what is called a false dilemma logical fallacy: that there is either/or, when in reality there are many alternatives that people can choose from. Saying “If we don’t have all of these types of care, we shouldn’t offer this option” is like a hospital that does not have sufficient amounts of IV pain medications saying to a labouring woman, “Well, we don’t have enough IV pain medications, so we are not going to offer you a labour epidural, because that is a false choice.” That does not actually make sense.
Look at it from a patient’s perspective. Think about a patient who is dying from terminal cancer, is in lots and lots of pain and does not have any good options for their pain control. Imagine saying to that person, “We don’t have all of this care or this option over here available to you, so we are not going to allow you to have an assisted death”, even if they are telling you, “This is what I want. Why won’t you give this to me?”. It does not make sense to remove this as an option just because all of the options might not be available to everyone all of the time. It is a bit cruel when you think about it from a patient’s perspective.
The Chair
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.
Dr Opher
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—
The Chair
Order. I am sorry; I hope this does not sound rude, Dr Kaan —regrettably, there are procedures in Parliament that require me to do this—but we have come to the end of the allotted time for the Committee to ask questions. I thank the witnesses Dr Spielvogel and Dr Kaan for your contributions and time. This was very valuable.
Thank you to our witnesses and for all the contributions, and for your forbearance on this very sensitive subject.
Danny Kruger
On a point of order, Mr Dowd. I wonder, given the fact that we have had so many really helpful conversations and questions but not enough time for everybody to ask everything they wanted, whether it would be appropriate for Members who want to write to witnesses to ask for follow-up information or further questions could do so through the Committee, rather than us all deluging the witnesses with our own messages, some of which will duplicate each other. I appreciate that there is a capacity question for the Clerks, but it might be appropriate to ask the Speaker for a bit more resource to enable that to happen. I think that the hon. Member for Spen Valley broadly supports the idea; I do not know if others do, as well.
The Chair
Let us be clear. Witnesses can submit written evidence until the Committee reports to the House. It is open to Members to individually write to witnesses and invite them to give written evidence, if they so wish. My advice to the hon. Member is that if he wishes to look at this in a more formal way or through a more formal mechanism, he is to speak to the Committee Clerks, because it is beyond my remit.
We now come to motions (a) to (d) amending the sittings motion tabled by the Member in charge. I have selected the amendment tabled to motion (a) and will group all four motions and the amendment for debate. I will first call Kim Leadbeater to move motion (a), then Naz Shah to move the amendment. The scope of the debate is all four motions and the amendment.
Kim Leadbeater
I beg to move amendment (a), in the list of witnesses set out in the table in the Sittings Motion agreed by the Committee on 21 January 2025, after Mencap (Thursday 30 January, until no later than 5.00 pm), leave out “Representative of Senedd Cymru” and insert—
“Professor Emyr Lewis (Emeritus Professor, Department of Law and Criminology, University of Aberystwyth), Royal College of General Practitioners, Royal College of Psychiatrists.”
These amendments allow additional witnesses to be called to give oral evidence, including representatives from Disability Rights UK, the Royal College of General Practitioners, the Royal College of Psychiatrists, and an expert in Welsh devolution and constitutional matters.
As the sessions today have shown, hearing from expert witnesses is an extremely important part of this process, so I hope I have the support of the Committee in making these additions. On the motion to call additional witnesses tabled by my hon. Friend the Member for Bradford West, I respect the suggestion but I am confident that we have an eminently qualified witness to cover issues of coercion and domestic abuse in Professor Jane Monckton-Smith, who was suggested by my hon. Friend.
We have also heard today—and will hear from many witnesses over the next few days—from medical doctors, social workers, nurses, palliative care experts and geriatricians. That is around 50 witnesses in total. While I fully appreciate that a wide range of additional charities and organisations has valuable contributions to make, I would encourage them to submit written evidence so that the Committee has the benefit of their thoughts.
Regarding the start of the line-by-line scrutiny of the Bill, given the huge volume of evidence—both oral and written—that we have received and are still receiving, I have consulted with colleagues across the Committee and there is a consensus that having next week to absorb and evaluate the evidence, and to prepare any amendments in light of it, is extremely important. Consequently, we would begin line-by-line scrutiny on Tuesday 11 February, as per the amendment.
I hope that these amendments demonstrate the robust approach that the Committee and I are taking to our work, and I encourage colleagues to support them.
Naz Shah
I beg to move an amendment to amendment (a), at end insert—
“Richard Robinson, CEO of Hourglass, Cherry Henry-Leach of STADA, Standing Together Against Domestic Abuse ”.
I completely agree with my hon. Friend the Member for Spen Valley and I am grateful to her for adding Professor Jane Monckton-Smith to the witness list. I also absolutely agree that the evidence we receive is really valuable.
This is an amendment tabled yesterday by the Mother of the House, my right hon. Friend the Member for Hackney North and Stoke Newington (Ms Abbott) yesterday, to which I have added my name.
The reason for the amendment is that Hourglass focuses on domestic abuse of older people and it has particularly noted that the majority of such victims are female. Hourglass estimates that one in six elderly people are victims of coercion in the UK. This raises serious concerns that such people could be pushed into ending their lives if the Bill is enacted. Hourglass has not published a public opinion on the Bill.
Standing Together Against Domestic Abuse has said that
“We must echo concerns raised by the VAWG sector”—
the violence against women and girls sector—
“and disability activists about the bill’s current safeguards. There is insufficient clarity on what constitutes coercion and limited reflection on carer capacity to support someone terminally ill. Without robust measures, there is a real risk that assisted dying could be exploited as a tool for coercion or even femicide.
Statistics show that over 88% of unlawful ‘mercy killings’ are perpetrated by men towards women, often involving violent means. These troubling realities demand urgent consideration in shaping this legislation.
We also highlight the health sector’s role in identifying domestic abuse. With 80% of victim-survivors having their first or only point of contact in healthcare, it is critical that health professionals are equipped to identify and respond to abuse.
We call on the Government to ensure the proposed bill includes stringent safeguards and that healthcare systems are equipped to recognise and prevent the potential misuse of assisted dying. Femicide is already a crisis in the UK, and no law should inadvertently contribute to its escalation.”
All my adult life, I have had experience of dealing with domestic abuse and coercion, and I draw on that experience to speak to these amendments. Although Professor Jane Monckton-Smith is an expert, she is an academic. These two organisations work with people who have been victims of abuse.
In addition, we had an official meeting with the Clerk to discuss the proposals for Committee sittings. It was said at that meeting that we would only have witnesses who would give evidence, particularly in person, that would contribute to the deliverability and the workability of the Bill. Since then, we have had families added to the list of witnesses. That adds weight to the argument that we should have witnesses who are providing a service to victims directly.
Dr Tidball
I, too, support my hon. Friend the Member for Spen Valley and in particular I want to highlight the helpful addition of Kamran Mallick of Disability Rights UK. That augments an already comprehensive list of expert disabled people, which includes: Professor Tom Shakespeare, an internationally renowned disability rights academic; Dr Miro Griffiths, a Disability Studies scholar at the University of Leeds; and Chelsea Roff, the founder of Eat Breathe Thrive. On the panel, we will also have a representative of the Equality and Human Rights Commission, who will be able to give a good overview on the intersection between protected characteristics. Finally, there will be Jon Sparkes, the representative of Mencap.
I am really pleased that my hon. Friend has worked so hard to ensure that the voices of disabled people are integrated across a number of the panels that we will see over the next two days, and the addition in her amendment is really helpful. I commend her for it.
Kit Malthouse
I, too, support the amendment proposed by the hon. Member for Spen Valley, and in particular the addition of Jane Monckton-Smith. I have read her book; it is definitely worth a read and is pretty alarming. I will address why I do not think the Committee should support the amendment to the amendment tabled to add other witnesses.
Jane Monckton-Smith has done a huge amount of research in the area, and as well as being an academic who specialises in coercion and femicide—and the impact that coercion has on femicide—she is a former police officer, so has significant frontline experience. As part of her research she will have spoken with and interacted with many of the groups that the hon. Member for Bradford West is proposing to include—although maybe not specifically. I would prefer it if we stuck with the list that the hon. Member for Spen Valley has put forward, and not add the additional witnesses proposed.
Lewis Atkinson
I agree with my hon. Friend the Member for Spen Valley. Having agreed to extend the time on Thursday to hear devolution issues and from the Royal College of General Practitioners and the Royal College of Psychiatrists, by adding two further witnesses, the amendment to the amendment would reduce the time available on those options. In an ideal world we would like to hear from all sorts of people. The option of written evidence is available. We have got other evidence, and I want to ensure that Thursday’s session is focused on the proposals that my hon. Friend has made.
Naz Shah
There is nothing in my amendment that suggests Professor Monckton-Smith is not capable in her expertise. I am asking for other expertise to be brought to the table. Yes, there is the argument that people can submit written evidence—but so could every witness we have heard from today, and that we will hear from tomorrow and the day after. If that is the yardstick, is this just a tokenistic exercise? I would argue that for women in particular, who are the victims of domestic abuse—
Dr Tidball
I note that Laura Hoyano, who is giving evidence on Thursday, is a domestic abuse barrister. She has also been involved in inquiries on child sexual abuse, and has a great range of experience in that area. She will bring that to the table as a practising barrister working closely on such cases.
Naz Shah
I welcome my hon. Friend’s intervention and I recognise Laura Hoyano’s expertise. I would respectfully push back that, as a victim of domestic violence—as a person who has experienced it and campaigned on it for all my adult life—there is a difference between an academic who has studied it and people who have worked with victims, in particular elderly women. The expert is a barrister with experience of young people and children and domestic abuse, and Professor Monckton-Smith is also an academic—yes, she has been a police officer—but I would value a witness who has worked with victims of domestic abuse. That is all I have to say on it.
Question put, That the amendment be made.
Question negatived.
Main Question put and agreed to.
Amendments made: (b), in the list of witnesses set out in the table in the Sittings Motion agreed by the Committee on 21 January 2025, after
“Professor Aneez Esmail (University of Manchester)”
insert “Disability Rights UK”.
Amendment (c), in the list of witnesses set out in the table in the Sittings Motion agreed by the Committee on 21 January 2025, after
“Dr Lewis Graham (University of Cambridge),”
leave out “John Kirkpatrick” and insert “Baroness Falkner”.
Amendment (d), in paragraph (2) of the sittings motion agreed by the Committee on 21 January 2025, after “Wednesdays” insert
“starting on 11 February 2025”.—(Kim Leadbeater.)
Ordered, That further consideration be now adjourned. —(Kit Malthouse.)
5.30 pm
Adjourned till Wednesday 29 January at twenty-five minutes past Nine o’clock.
Written evidence reported to the House
TIAB 01 Ben Scott
TIAB 02 Michael Vidal
TIAB 03 Compassion in Care
TIAB 03(a) Compassion in Care (further evidence)
TIAB 04 Dr George Gillett, an NHS doctor and psychiatrist
TIAB 05 Dr Stephen Hutchison MD
TIAB 06 Dr Andrew Boorne
TIAB 07 Jess Carrington, Registered Social Worker and Best Interests Assessor
TIAB 08 Greg Lawton MPharm MRPharmS FFRPS MBCS LLM, Barrister and Pharmacist
TIAB 09 Australian Care Alliance
TIAB 10 Dr Peter Knight
TIAB 11 Dr Isky Gordon FRCR, FRCP, Emeritus Professor Paediatric Imaging, UCL, London
TIAB 12 Dr Peter O’Halloran, RN, PhD, Registered Nurse, Senior Lecturer, Queen’s University Belfast, Researcher in chronic illness, palliative and end-of-life care
TIAB 13 Rose
TIAB 14 Dr Rachel Fisher
TIAB 15 Nigel Andrew Gordon Jones, a retired Consultant General Surgeon
TIAB 16 St Gemma’s Hospice
TIAB 17 Sir Nicholas Mostyn
TIAB 18 Leah Locke
TIAB 19 Alison Taylor
TIAB 20 Dr Katharine Crossland
TIAB 21 John Forrester
TIAB 22 Don Stickland
TIAB 23 Christina Blandford-Beards
TIAB 24 Society for the Protection of Unborn Children (SPUC)
TIAB 25 Catholic Bishops’ Conference of England and Wales
TIAB 26 British Association of Social Workers
TIAB 27 Plunkett Centre for Ethics: A centre of Australian Catholic University located at St Vincent’s Hospital Sydney
TIAB 28 Dame Sarah Mullally, Bishop of London, Lead Bishop on Health and Social Care for the Church of England and former Chief Nursing Officer for England on behalf of the Bishops of the Church of England and the Archbishops’ Council
TIAB 29 Cicely Saunders International
TIAB 30 Lejeune Clinic for Children with Down Syndrome
TIAB 31 Voice for Justice UK
TIAB 32 Get on Downs - a Down Syndrome Support Group
TIAB 33 British Medical Association (BMA)
TIAB 34 Portsmouth Down Syndrome Association
TIAB 35 Better Way campaign
TIAB 36 Hospice UK
TIAB 37 Association of Catholic Nurses for England and Wales
TIAB 38 East Midlands Palliative Medicine Consultants and Specialty Doctors
TIAB 39 Marie Curie Palliative Care Research Department, University College London (UCL)
TIAB 40 Humanists UK
TIAB 41 Nuffield Council on Bioethics’ (NCOB)
TIAB 42 Marie Curie
TIAB 43 LOROS, the Leicestershire and Rutland Hospice
TIAB 44 Professor Emeritus Sam H Ahmedzai
TIAB 45 Professor Nancy Preston, Professor of the International Observatory on End of Life Care, Lancaster University; and Professor Suzanne Ost, Law School, Lancaster University
TIAB 46 Professor Alex Ruck Keene KC (Hon)
TIAB 47 Anureg Deb and Dr Lewis Graham
TIAB 48 Australian Centre for Health Law Research, Queensland University of Technology, Australia
TIAB 49 The Bios Centre
TIAB 50 The Orders of St John Care Trust
TIAB 51 Living and Dying Well
TIAB 52 Professor Katherine Sleeman, King’s College London
TIAB 53 British Islamic Medical Association (BIMA)
TIAB 54 Joint written evidence submitted by Chelsea Roff (Eat Breathe Thrive, UK), Dr Angela Guarda (Johns Hopkins University School of Medicine, US), Dr Philip Mehler (University of Colorado School of Medicine, US), Dr Patricia Westmoreland (University of Colorado, US), Dr Scott Crow (University of Minnesota, US), Dr Catherine Cook-Cottone (University at Buffalo, SUNY, US), Dr Anita Federici (York University, Canada), and Dr Agnes Ayton (Oxford Health NHS Foundation Trust, UK)
TIAB 55 Professor Allan House
TIAB 56 National Care Forum (NCF)
TIAB 57 AtaLoss
TIAB 58 Compton Care
TIAB 59 Dr Odette Spruijt, Medical Director, Launceston Specialist Palliative Care Service
TIAB 60 Rachel Pegrum, Independent Social Worker
TIAB 61 Abdul Rahman Badran
TIAB 62 Alan Thomas, Professor of Old Age Psychiatry, Director of Brains for Dementia Research, Translational and Clinical Research Institute, Faculty of Medical Sciences, Newcastle University
TIAB 63 Dr Julian Neal
TIAB 64 Dr Raymond Towey
TIAB 65 Multiple System Atrophy Trust
TIAB 66 Dr Adrian Tookman
TIAB 67 Royal College of Psychiatrists
TIAB 68 UK Medical Freedom Alliance
TIAB 69 Association of Anaesthetists
TIAB 70 Catholic Union of Great Britain
TIAB 71 My Death, My Decision
TIAB 72 Health Advisory and Recovery Team (HART)
TIAB 73 Kyam Maher MLC, the Attorney-General of South Australia, in his capacity as a member of the Legislative Council of South Australia
TIAB 74 Dr Calum MacKellar, Director of Research, Scottish Council on Human Bioethics
TIAB 75 Christian Medical Fellowship
TIAB 76 Christian Medical and Dental Association of Canada
TIAB 77 Christian Legal Centre
TIAB 78 Written evidence submitted on behalf of a group of anorexia nervosa sufferers and carers
TIAB 79 Dr Angelika Reichstein, Associate Professor in Law, University of East Anglia
TIAB 80 Dr David Randall
TIAB 81 Cruse Bereavement Support
TIAB 82 Compassion in Dying
TIAB 83 General Medical Council (GMC)
TIAB 84 Pathfinders Neuromuscular Alliance
TIAB 85 Royal Pharmaceutical Society
TIAB 86 Motor Neurone Disease Association
TIAB 87 Dr Simon Eyre
TIAB 88 Macdonald Amaran
TIAB 89 Patrick Pullicino
TIAB 90 Luis Espericueta, Researcher and lecturer in bioethics at the University of Granada, Spain
TIAB 91 Healthcare Professionals for Assisted Dying
TIAB 92 PSP Association (PSPA)
TIAB 93 Association for Palliative Medicine of Great Britain and Ireland (APM)
TIAB 94 Academy of Medical Royal College's
TIAB 95 Care Not Killing
TIAB 96 Dr Alexandra Mullock, Senior Lecturer in Law
TIAB 97 Rt Hon. Sir Stephen Sedley
TIAB 98 Carole O’Reilly
TIAB 99 Dr Hannah Denno
TIAB 100 Prof B Anthony Bell MD, Neurosurgeon, University of London
TIAB 101 Matthew Hoyle, Barrister
TIAB 102 Royal College of Nursing