Terminally Ill Adults (End of Life) Bill (Seventh sitting)

Tom Gordon Excerpts

Committee stage
Thursday 30th January 2025 Public Bill Committees

[Kim Leadbeater (Spen Valley) (Lab)]

Q For clarity, Dr Ward, you are right that clause 34 requests that the chief medical officer submits an annual report. You clearly have many years of experience in this subject. For you, what does best practice look like when it comes to assisted dying, end of life choice and end of life care? That is what we are all aiming for in our deliberations. How do we keep it patient-centred?

I notice that you have also spoken a lot about misinformation; how do we tackle that? How do we make sure we are dealing with facts rather than speculation? In particular, how do we provide reassurance to marginalised communities and people with disabilities, who are understandably nervous about this change in the law? When it comes to safeguards and protections, what does best practice look like?

Dr Ward: To take your last point first, we must involve them in the process and have an open dialogue with them. That means not just in the consultation process, when you are considering passing legislation, but when you have your implementation taskforce, on which you must make sure you have representation from across all the stakeholders involved, including people with disabilities and people with terminal illnesses.

I would point to the fact that best practice is about balancing the autonomy, dignity and compassion that the Bill aims to achieve by giving people the option of assisted dying, while also protecting vulnerable people who feel that there are worries and concerns. However, having worked in this area for 13 years and seen people who would really benefit from having this option, and living now in a jurisdiction that has it, I would point out that some of the most vulnerable people I have seen are the terminally ill who want and need this choice. It is about taking a holistic and evidenced-based approach.

You as a Committee will hear from the great and the good across the board, and I am pleased that the Committee is taking account of lived experience, because that is very important to inform the decision-making process. It is about making sure that we are going to the source of evidence and using peer-reviewed data and Government data. Again, as I said earlier, you really need to trust your international colleagues who have gone before you on this. We need to consider what the Bill does versus inaccurate perceptions of or speculations on what it might do. The task here is to consider what is in front of you, not what might happen down the road.

[Tom Gordon (Harrogate and Knaresborough) (LD)]

Q Dr Ward, I think the point about a holistic and evidence-based approach is critical. In the work that you did in the Scottish example you gave, how was the terminal illness definition arrived at? How are you capturing those people who are vulnerable and want to have an assisted death, but might end up limited in their scope and ability to access it?

Dr Ward: Look: assisted dying is the same as any other healthcare choice. It is always going to be limited. We are not going to reach everyone that we absolutely would want to. There are people who want to have this option and this choice who will not qualify under a terminal illness definition, but we have to draw the line somewhere. We looked at international evidence from Commonwealth countries that are very closely linked to Scotland and the UK. We drew the line with the definition that the person has an advanced progressive illness from which they are unable to recover and that will cause their premature death. For us, that demands the support of Members of Parliament in Scotland and the support of the public.

I really stress the fact that each jurisdiction has to legislate according to its own constitutional, societal, legal and cultural considerations, which is what we have done in Scotland. That is the definition that is working for us now. Previously, there were more liberal attempts that did not gain the support of the House. We believe that we have arrived at a situation that is very similar to the definition of terminal illness here in Westminster, and that is both safe and compassionate but also draws the line so that people who should not be able to access this do not.

[Naz Shah (Bradford West) (Lab)]

Q Professor Owen, yesterday Professor Allan House gave evidence and talked about capacity and coercion, and I want to pick up on some of the concerns. In all four of the jurisdictions that collect data on the issue—Oregon, Canada, Western Australia and Washington—between 35% and 59% of people cite being a burden as a reason for assisted dying. What do you think is the level of confidence of psychiatrists to assess capacity and consent reliably? What would your concerns be, if any?

Professor Owen: This is an essential question. I work clinically in the over-65 age group, where there is a lot of terminal illness, some of it in the last six months. You have to understand the population. The population is typically over 65 and frail. There can be a terminal illness, very typically with comorbidity. That comorbidity is often mental health comorbidity. Depression is at rates of 20% or thereabouts. Delirium and cognitive impairment is very common and often not picked up. There is patchy safeguarding, patchy access to social care and, as I know you have been hearing, patchy access to palliative care.

That is the ordinary person in the NHS. I know people who select into assisted dying are not necessarily that mean person, so to speak, but that is just a picture of what it looks like for me when I go to work. That is where one starts. Now think about burden. Well, this is a group that do feel very burdened. You might think some of that is excessive; some of it maybe is natural, given the life stage. So it is a mixed picture.

When it comes to pressure and coercion, I know you have been grappling with this a lot as a Committee, and I know there have been some amendments that address this. We have talked about clause 26 particularly in relation to this. Of course, when it comes back to the training question, you can take evidence on the state of safeguarding and how people are really able to assess coercive control, domestic violence and so on.

I would like to draw attention to something else that I am not sure has come so much to the attention of the Committee, which is not the offences or the criminal side of this; it is the common or garden capacity assessment side of it. This relates really to clause 1. It is the issue of how you deal with interpersonal pressures on somebody in a situation where there may be a mental health problem and there may not even be a diagnosis. You might be talking about a kind of cognitive impairment that has not reached the threshold for a diagnosis of dementia; you might be talking about a kind of mood problem or an anxiety problem that is sub-clinical; or you might be talking about a level of intelligence that is not clinically a learning disability. But it is there and it is interacting with a form of pressure within a family, let us say, which is often not malign in its intentions, but it exists. It is a very overvalued relationship, for example, with a strong sense of loyalty to somebody, or an enmeshment, for example.

What you have are situations where there is an impairment and also an interpersonal pressure. They interact and they amplify each other. That can have an important consequence in terms of the functional ability of mental capacity. Outside of the assisted dying context, when you look at that in the Court of Protection, which has been struggling with quite a lot of cases like this, that phenomenon of interaction that I am talking about between interpersonal pressure and impairment is recognised. It struggles with it. I have been involved in some research to try to structure the understanding of it, but it is not at the point where it is a kind of training manual that you can lift down from the shelf and roll out across the workforce. It is much more in a kind of research and development phase.

So it is important to draw attention to pressure not necessarily as malign in its intention, but which nevertheless operates in these situations and can have a subtle impact on the functional test of decision-making capacity. To bring us back to what the decision-making capacity is that we are talking about, it is the decision to end one’s own life.

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[Rachel Hopkins (Luton South and South Bedfordshire) (Lab)]

Q Claire, you mentioned multidisciplinary teams and decision making. We have heard in a couple of other evidence sessions from palliative care social workers, nurse practitioners and the Royal College of Nursing about the multidisciplinary approach in care. What are your thoughts on the ultimate approval as set out in the Bill being a doctor, another doctor and then a legal okay at the end? Would a more multidisciplinary approach to approval have stronger outcomes or better safeguards?

Claire Williams: I absolutely agree that a panel/committee approach would have better safeguarding for patients, because the decision is being made collectively with legal expertise and with other healthcare professionals—that might be palliative—or ethicists like myself. It is having that collective view, ensuring that everybody is happy and that that is exactly what the patient wants. I believe it should be a committee/panel-based approach for the final decision. As I said before, expecting a High Court judge—just one individual—to make that decision alone is hugely burdensome and not an approach that we should be taking.

[Tom Gordon]

Q Professor Preston, we have heard from a wide range of different people from different jurisdictions. What we have heard and the evidence suggest that where we see assisted dying as an option, we tend to see improvements in palliative care. Do you have any comment on that and how we could better integrate into giving people that choice? You talked earlier about different routes and different systems in countries where it might sit outside the healthcare setting. Would that limit the choice and hinder people’s ability? How do you see that having a play in this?

Professor Preston: There is a bigger and bigger conversation in a lot of these countries, including the Netherlands and Switzerland, that this is not about healthcare. I know that sounds a really strange thing, but it is about self-determination and a life choice. I remember someone saying to me, “Well, you wouldn’t check who I’m marrying.” They feel it is such a personal choice. I think patients do bring this up. They bring it up all the time now. Studies in Spain have shown that if a patient has a desire for hastened death, the best thing you should do is explore that desire. Why do they have that desire? How can we help you? Are there other needs we can meet? Most people will not want to then go ahead and have an assisted death. This is a minority of people. Could you remind me of the rest of your question?

[Tom Gordon]

If you have systems where assisted death is offered outside the healthcare setting, as in some of the countries around the world that you have mentioned, how does that limit people’s access to it? Do you think that has an impact?

Professor Preston: I think it almost enhances their access to it. At the moment, they get lost in the system. They are usually trying to find these two magical doctors—in a lot of countries, you still have to find those two doctors. Most doctors, even if they approve of the idea of assisted dying, do not want to be part of it. They might assess, but they might not prescribe. They might prescribe, but they would not administer. Trying to find those doctors to do it is really quite challenging. That is what we get back from the bereaved family interviews. How do you navigate a system where you cannot access the people you need to get to? People go doctor shopping—they are going to multiple doctors until they get the right answer.

If you keep it safer, outside of healthcare, people can talk to their doctor—they will mainly talk to their nurses, because they are the ones who do end-of-life care predominantly—and they can say, “Actually, that is not something we can do, but if you want to see, we have a stand with information about it. This is the service you can go through.” It is the same with the GP—things like that. I think it might actually make it easier for people to navigate. That is where I came to the idea of keeping it outside. It is a supportive way for patients and families because, on top of all this, they are dying. They are having a really difficult time and we are trying to get them to navigate services that are incredibly difficult when you are trying to find two doctors.

Just finally, on top of that, it is quite secret who does this. Doctors do not want to tell people. I have had people who do this—who might just assess and may not prescribe or administer—and they do not want people to know in palliative care because it does not go well for them. They are concerned that people will not like it. I do research in this area, and some people think that means that I am trying to push for assisted dying. I am not; I have a neutral stance. I will say things pro; I will say things against. But it is quite difficult for people involved. There is a bit of a taboo—there is a secrecy. It makes it even harder to say in the Bill, “Recommend another doctor.” It will be a challenge to find that person.

Dr Richards: May I add something? The evidence suggests that one of the implementation challenges with assisted dying is finding doctors willing to participate—consciously participate—in this practice. However, I think what you are asking there is about a more Swiss model of assisted dying. There is a reason that the Swiss model of assisted dying has stayed in Switzerland and gone nowhere else—it has not transferred or translated to other jurisdictions, because of its uniqueness and the practical challenges of disentangling it from a healthcare system.

It is important to recognise that, but we are also talking a little about disentangling assisted dying from palliative care. It is important to recognise that the majority of people who request assisted dying—who receive assisted dying—are within palliative care. They are already in that, as I am sure you have heard already. To disentangle assisted dying from the specialist communication around end of life would seem to be a self-inflicted problem of design, in my view, because it is safest being held there by the experts for those who want to get involved in it. It is safest being held in the healthcare system. As I say, there is a reason why the Swiss model is the only model where that happens outside a healthcare system. That is localised to Switzerland.

[Dr Opher]

Q I would just like to ask Claire about medication—not specifically the drugs and everything, but clause 18, “Provision of assistance”. We have heard that in Australia the medication is left with the patient, whereas under this legislation the co-ordinating doctor brings the medication to the house or the place where the patient wants to end their life. Do you feel, having seen the Bill, that that is safe, or do we need to amend it in any way?

Claire Williams: Again, those safeguards would need to be in place. There would be concerns if they were not actually giving the drug to the patient, and seeing the patient take the medication. Yes, robust safeguards would need to be in place.

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[The Chair]

Q Thank you. I can see that our third guest, Julie Thienpont, has appeared on screen. Welcome, Julie. Would you like to say a few words before we continue?

Julie Thienpont: I am Julie Thienpont, and my husband and I were living in Spain at the time. My husband was diagnosed with mesothelioma and given three months left to live, so he opted for assisted dying. It was quite a rigorous process in Spain. It only came into law there in 2021, and he was one of the very first people in the south of Spain to take the opportunity of assisted dying.

[Tom Gordon]

Q Thank you all for coming here and sharing your personal experiences. I think it really adds to this, and it is why we are all here. My question is about access, which is one of the conversations surrounding the Bill, and how, if we do not legislate now, we might not see another debate or Bill brought forward for potentially a decade or longer. What are your views on that? I think some people see it as a point from which we either will progress or will not. Do you feel that this needs to be a continuing conversation, particularly with regard to palliative care and the experiences that your loved ones might have had in that system?

Liz Reed: As I said, my brother died in a hospice in Australia, where the hospices are extremely well funded, and the care he received was sensational. The team and the staff in that hospice made the time he had in there. Obviously, it was not amazing, because he was dying, but for a really difficult situation, it was comfortable for his family, and he had young children. You could not fault the care and access to the medication. We as a family, after he died, went back to the hospice to say, “This was changing for us and for him.”

But it did not change what was happening to my brother. He went from a hospital to a hospice, and he had a date planned for his death. He then actually changed his mind and extended it, because it was better than being in a hospital and the hospice care was great, but he still landed at the same point of saying, “This is not living.” It was not what he wanted, and not what he wanted. From a personal perspective, when he was diagnosed, we said, “You’ve got to come home.” But actually, I think, “Oh my God, what would have happened to him? How long would he have had to go on? How long would his children have had to watch him?” He was only 39 and his children were young, and they did not have to—they still remember their dad. For him, for his wife and for our family, I would not change anything.

[Lewis Atkinson]

Q Pat, if the Bill, as it is currently drafted, had been in place in your family’s situation, what difference would that have made to your family’s experience?

Pat Malone: In all three cases, it would have improved their lives and their deaths. My father died at the age of 85 from pancreatic cancer. He asked me to help him kill himself while he was in hospital in the last three or four weeks of his life. Obviously, I was not able to do so. He suggested that I put poison in his water, which I had no idea how to action. I spoke to his consultant and asked whether he could do anything to hasten his end, and he said, “No, no, no, I can’t.” After that, he lasted another three weeks and he had a horrendous death. It has scarred our family to this day.

My brother contracted the same disease, pancreatic cancer, and having seen my father die, he—having gone to six doctors and asked them whether they could help him end his life; he was under home hospice palliative care at that time—contrived his own suicide. Unfortunately, he asked his wife to sit and hold his hand while he died, as a result of which there was a police investigation into collusion. She and her daughter, who was also in the house at the time, were not cleared for eight months, during which they were interviewed repeatedly about anomalies and what they did or did not know. It was absolutely unconscionable to pile that on top of their grief, at a time when they had just lost their father and husband.

My sister’s death, having seen those two deaths, was much easier. She got motor neurone disease and was not really suffering in the way that my father and brother had been. She knew that her end was going to be as a live brain in a dead body, and that was the horror that she faced. From the beginning, she was fixed on going to Dignitas, which she did. It was not easy because, after the example of my brother’s family, she would not allow anybody in her family to have anything to do with the arrangements that she had to make, which were quite complicated and became ever more difficult for her. First, she could not drive a car any more and was going around on a mobility scooter, gathering endless documents and having all the tests that you need to have. Ultimately, she said, “This is my golden ticket.” When she was accepted by Dignitas, she said that it was the greatest relief of her life. She said, “I know I am not going to get cancer or dementia. I’m going to die painlessly at a time and place of my choosing.”

That is exactly what she did, but she died 1,000 miles from home. She should have died in her house with her family, and her dogs on the bed. She should not have been denied that. Had this Bill been enacted in her time, it would have been a much easier operation. The problem with this legislation mainly is that it is so long overdue. There are people now who are in that position. You may think our family is star crossed because we have had three deaths like that, but I think we are just a normal family. It is happening all the time. Chris Whitty talked on Monday about how we should not rush into this. We are not rushing into it; we are at the back of the queue, really.

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[The Chair]

In the interests of time, to allow everybody to ask their question, will Members indicate which of the panel members they would like to answer so that only one gives an answer? That allows everybody to get in.

[Tom Gordon]

Q We have had a lot of conversations and taken a lot of evidence over the last few days about a gag clause to prohibit medical professionals raising assisted dying as part of the options at end of life. We have heard from different states and jurisdictions on whether or not that is something that they had. Broadly speaking, the consensus was that it did not seem to work. Dr Mulholland or Dr Price, I wondered if you had any comment on that.

Dr Mulholland: That is something we have been thinking about carefully at the RCGP. Part of our normal discussion will often open it up for patients to lead discussions around their end of life. We see there could be potential restrictions for that clinical consultation with a gag order. We very much follow the opinion I heard from Dr Green from the British Medical Association earlier in the week. We go along with that.

We are very protective of our relationship as GPs, and want to give patients the options that they might want to choose for themselves. We are not usually pushing anyone to any decision, but supporting them through their end-of-life journey. We would want to protect that in whatever way, so we therefore feel that a service we can signpost to would be the most appropriate thing as the next step.

Dr Price: As a psychiatrist and as a representative of the psychiatric profession, it is noted in the Bill that mental disorder is a specific exclusion. It is very unlikely that a psychiatrist would suggest or bring up assisted dying in a conversation.

I think a concern allied to that is people with mental disorder who request assisted dying from their psychiatrist. It may be clear to all that they do not meet eligibility criteria for that, but it is not absolutely clear in the Bill, as it is written, to what extent a psychiatrist would have to comply with a wish for that person to progress to that first assessment. There is quite a lot involved in getting to that first official assessment, such as making a declaration and providing identification. A psychiatrist might therefore have to be involved to quite an extent in supporting that person to get there if that is their right and their wish, even though it may be clear to all that they do not meet eligibility criteria if that is the primary reason for their asking to end their life.

[Jack Abbott]

Q My question is also for you, Dr Price. The Royal College of Psychiatrists has been really clear in its statement that we as parliamentarians have to consider the outstanding questions about a person’s capacity to decide to end their own life, and whether it can be reliably assessed, and you particularly cite the implications for those with mental disorders, intellectual disabilities and neurodevelopmental conditions. Do you believe that anyone requesting assisted dying should be assessed automatically by a psychiatrist, or that certain criteria should have to be met for a psychiatric assessment to be undertaken?

Dr Price: If I take you to thinking about what an assessment of capacity would normally look like, if we think about clinical practice, a psychiatrist would normally get involved in an assessment of capacity if the decision maker was unclear about whether that person could make a decision. The psychiatrist’s role in that capacity assessment would be to look for the presence of mental disorder, and at whether mental disorder was likely to be impacting on that person’s decision making. They would advise the decision maker, and the decision maker would then have the clinical role of thinking about that information and assessing capacity with that in mind.

Psychiatrists sometimes assess capacity and make the determination, but it is usually about psychiatric intervention and issues that are within their area of clinical expertise, such as care and treatment, capacity assessment around the Mental Health Act 1983 and whether somebody is able to consent to their treatment. In the Bill, I am not absolutely clear whether the psychiatrist is considered to be a primary decision maker on whether somebody should be eligible based on capacity, or whether their role is to advise the decision maker, who would be the primary doctor or one of two doctors.

Should a psychiatrist be involved in every case? If there is a view that psychiatric disorders should be assessed for, and ideally diagnosed or ruled out, in every case, a psychiatrist might have a role. If they are seen as an expert support to the primary decision maker, that decision maker would need to decide whether a psychiatrist was needed in every case. We know from Oregon over the years that psychiatrists were involved very frequently at the beginning of the process, and now they are involved by request in around 3% of completed assisted dying cases. We do not have data on what the involvement is across all requests.