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

Rachel Hopkins Excerpts

Committee stage
Thursday 30th January 2025 Public Bill Committees

[Naz Shah]

Q Professor Preston, in your written evidence to the Committee, you said that Parliament should:

“Consider whether there should be a stated exception to the usual presumption of capacity under the Mental Capacity Act 2005 in the Bill.”

What kind of standard do you think Parliament should consider adopting instead of the use of the Mental Capacity Act, and why do you think that?

Professor Preston: Again, this came from my colleague Suzanne Ost, who is a professor of law. As Naomi said, this is something very different from choosing to consent to an operation or even a research study. This is finite—it is a finite decision, so therefore the assessment should be a bit more. What I will say about mental capacity is that we had a PhD student who assessed mental capacity decisions by hospice care staff—particularly doctors, but also a lot of the nursing team who were making the decisions. She was a lawyer, and her conclusion was that it was incredibly well assessed. That was in terms of safeguarding—so, when people were going back to what we might consider unsafe homes—but that is what the person wanted, because their life was that unsafe home. I am talking about social deprivation and things like that. The people in this particular team were very good at assessing that and applying the Mental Capacity Act, according to her research.

[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?

--- Later in debate ---

[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.

[Rachel Hopkins]

Q Thank you all for sharing your family stories today. It is really moving. Julie, I want to ask about your experience in Spain and how you found that particular process in comparison with what we have in the Bill. How did it work? What was positive or difficult for you?

Julie Thienpont: Guido had decided right from the word go, even before he got sick, that that was the way he would want to end his life, if there was a possibility of it. He was from Belgium originally, so he expressed a wish that if ever he needed it, he would like to go back there.

The law in Spain is very similar to the Bill, which I have read through countless times. There are a lot of similarities. There were very rigorous checks. It involved much paperwork, counselling and family liaison. The difference was that it went before a board, so it was a panel that would allow or not allow the decision—it was not decided in a court. That would be the main difference, but the process was rigorous. It was slightly difficult for me, because although I can speak Spanish, the terminology was frequently more difficult, so they very kindly translated for me. They explained everything: what would happen and how it would happen, if it happened. It was a big celebration for Guy when he was actually granted this. They also told us that he could change his mind after he had made the decision, should he wish to. He did once. It was me who asked him to do that, because I did not feel he was sick enough, which sounds a bit silly, I know.

He was an intensely private person. The palliative care in the part of Spain where we were is excellent, but it was quite irrelevant for him because he had already expressed that he wanted to die at home. We lived up a mountain; we were quite remote. Being such a private person, he never wanted to be in a situation where somebody else had to see him in any vulnerable situations, especially with personal hygiene and so on—even me, although I was able to help him in many ways. I had to do a lot of procedures for him, after being trained to do so, but he was more than happy with the situation of having assisted dying once it was granted. He did not need any other sort of care, although we still had a nurse coming every few days and the family doctor came up at least once a week. That does not sound much, but he did not want her any more often than that.

[Danny Kruger]

Q This is a question for Mr Malone. May I say how greatly I sympathise with what you have been through? I am very sorry to be fighting against you in this matter. I really can imagine how that feels. Thank you for what you said. I just want to ask about your sister’s experience. On the eligibility question, is it your belief that she would have qualified for an assisted death under the Bill, with the six-month terminal illness criterion? To follow up on that, do you think we should expand the scope to include people with motor neurone disease who might not fall within the six months?

Pat Malone: She would not qualify, because there was no telling how long she would live as a live brain in a dead body, as she said. It could have been months or even years, so she would not qualify in any case under this Bill. However, you have moved mountains to get to this point, so the last thing in the world I want to do is pile more requirements on the Bill. I would like to see some stuff stripped out of it, actually, to make it easier, but I am not going to ask for that because we desperately need to get away from the status quo. This Bill gets us away from the status quo.

--- Later in debate ---

[Kit Malthouse]

Q I also want to explore this issue of capacity a little further with Dr Price, because I share my colleague’s slight confusion.

You talked about a percentage who wish to hasten death. The people we are talking about are facing death in any event within a foreseeable period, and they may be contemplating a death that is not pleasant. Some of the characteristics you talked about are presumably to be expected and may not necessarily interfere with their ability to make rational decisions in what they believe is their own best interest. In those circumstances, I do not understand why the Mental Capacity Act would not apply. I understand that you may be coming at it from a practitioner point of view, but if I make a decision to decline treatment to hasten my own death, I am not sure I would necessarily see that as qualitatively different, from the point of view of my own capacity, from saying, “I know I am going to die in three months’ time and I would like you to assist me to die slightly earlier.” Why are the two qualitatively different, from an MCA point of view? At the moment, one would be dealt with through the MCA, but you are saying the second would not necessarily be.

Dr Price: You are equating a refusal of treatment, in capacity terms, to hastening death by assisted dying. If those two things are equated, in terms of the gravity and the quality of the decision, the Mental Capacity Act may well be sufficient, but there are differences. There are differences in the information that the person would need and what they would need to understand. They would need to be able to understand the impact of the substance they are taking and what the likely positives and negatives of that are—all of those things.

The informed consent process is different from a refusal of treatment, and the informed consent process feeds into the capacity assessment. This is an area where we need to think carefully about whether the processes of the Mental Capacity Act, as it stands, map neatly enough on to that decision to make it workable.

[Rachel Hopkins]

Q Dr Mulholland, I want to push a little on where you were saying the royal college sits on the ability of members to say that they would not want to participate in assisted dying, if it came through, and on your written evidence saying that you would like to see a separate body. Given that many GPs are already very much involved in the care of their patients and will often be doing a lot of palliative care themselves, particularly around medications, and given that the Bill is about terminally ill adults with a diagnosis of six months left to live, do you mean that all GPs would stop at that six months and it would go over to an independent body, or are you saying that those GPs who want to continue that care could do so but that those who do not want to be involved in a potential route to assisted dying would step out? I would like a little clarity on that, given the person-centred care that so many GPs do so well.

Dr Mulholland: The shape of the service is not set out in the Bill. We would say that GPs need to have a space where they can step away from it: that is the key point that we want to get across. For those who want to take part, it may be that they decide to do it, but it would have to sit outside the core general medical services that we provide at the moment. This is an additional thing; this is not part of our core job. We think that a separate service—it may not just be GPs; there may be lots of different practitioners and health professionals involved —would sit better with that. You could then assess the capacity and assess those other parts that are so important and are in the Bill at the later stages.

The GP may have a role, but that would be very much up to the individual GP to decide. It would not be set out that they should be taking part. They would then probably be part of this additional service to which the others who are not taking part could signpost. We just want to make sure that there is that clear space.

[The Chair]

As we have time, I call Danny Kruger.