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

Debate between Danny Kruger and Naz Shah

Committee stage
Thursday 30th January 2025 Public Bill Committees

[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.

[Naz Shah]

Q Thank you very much for coming today and sharing your stories. I have two questions. Julie, you said that you had family liaison and counselling. How long did that go on for? This Bill does not have that requirement, so do you think it is something that we should put in it?

Julie Thienpont: Maybe I said “counselling”, but it was not a session of counselling. It was somebody asking my opinion to check that I was 100% behind Guy. His son also did that by proxy—via us—because he was in a different part of Spain. They wanted to ensure that he had talked it over with family members. It was not hastened along, because he had been given a short life span, so it did not take terribly long. He had to wait about three weeks before the initial ball started rolling, and then two weeks later a family doctor and nurses from the hospital came round for form filling, reading through, translating and signatures, and again another two weeks after that. Each time, I believe it went before a panel. We did not, but the paperwork had to go before a panel. They were left in no uncertain terms that that was the way he wanted to end his life.

It was a very peaceful, serene and beautiful death, as opposed to what it would have been like. He was able to speak to his relatives in Australia, his brothers in Belgium and other family members, and I was able to hold his hand. Guy had always been a bit of an old cowboy, and he always said that he wanted to die with his boots on. I am proud to say that that is what he did. At the end, we were holding hands, and I said to him, “Don’t be afraid.” He said, “I’m not afraid,” and he winked at me just before he closed his eyes.

On the process, perhaps I should have said that it was intravenous, so he had a drip in each arm. It was quite a quick process—maybe 10 to 15 minutes, which I thought was quite quick—but we had had lots of time that morning, you know. It was a beautiful end—the wink especially. I am left with very good memories of such a peaceful death, which was going to happen regardless. He was at peace with it, so that helped me.

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

Debate between Danny Kruger and Naz Shah

Committee stage
Tuesday 28th January 2025 Public Bill Committees

[Danny Kruger]

Q I will just jump straight to my final question. Dr Kaan, you said that you felt that people who felt they might be a burden were exercising their autonomy, and it was a perfectly appropriate reason to seek an assisted death. Is that right, and do you think there is anything more we should do to make it easier for people to access this right? Do you think they should be asserting anything other than their wish to do so?

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, there is a Bill in California, SB 1196, which was introduced on 24 February 2024. It proposes, first, to remove the six-month terminal illness prognosis and allow requests from those with a “grievous and irremediable” disease causing unbearable suffering; secondly, to allow dementia patients to request assisted suicide if two doctors deem them to have capacity; thirdly, to allow self-administration of lethal drugs via intravenous injection; and, fourthly, to eliminate the sunset clause in the current law. Do you know what the status of that Bill is? Is it still live? It suggests a significant broadening of the law, which would have similarities to that in Canada, and it would seem to reinforce the slippery slope argument.

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.

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

Debate between Danny Kruger and Naz Shah

Committee stage
Tuesday 21st January 2025 Public Bill Committees

[Naz Shah]

On amendment (b), given the issue we are considering, I think it is important that the Royal College of Psychiatrists is involved. One thing that is very important to me is the issue of coercion, and the royal college would be able to shed light on that. One of the many reasons advanced for giving the Bill its Second Reading was that we would have further debate, and the royal college would add value to that.

On amendment (c), Dr Ramona Coelho is a physician with well-founded concerns about the operation of the law in Canada. She is a member of the Ontario Medical Assistance in Dying Death Review Committee, and she gave evidence to the Scottish Parliament Committee that considered the Assisted Dying for Terminally Ill Adults (Scotland) Bill.

On amendment (d), Ellen Clifford is co-ordinator of the UK Deaf and Disabled People’s Monitoring Coalition, and she has a key role in advocating for people with disabilities.

[Danny Kruger]

I want to speak in support of the proposed addition of Ellen Clifford. Last week, she won a High Court case against the previous Government for their consultation on benefits reform, so she is no friend of my party, but she is a powerful advocate on behalf of disabled people, and she represents the deaf and disabled people’s organisations that are so important in informing the Government on the implementation of policy that affects disabled people. I recognise that the hon. Lady has included some representatives of the disabled community, but I suggest that there would be particular value in hearing from Ms Clifford because of her role as the co-ordinator of the monitoring coalition of all these deaf and disabled people’s organisations across the country. She is the best person to advise the Committee on the operation of the Bill.

--- Later in debate ---

[Naz Shah]

Thank you, Sir Roger.

[Danny Kruger]

I want to make a general point in support of the hon. Lady’s suggestions.