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

Sarah Olney Excerpts

Committee stage
Thursday 30th January 2025 Public Bill Committees

[Kim Leadbeater]

Thank you so much.

Pat Malone: My experience with my father was entirely different. My daughter, who was seven at the time, reminded me recently, when I was putting my thoughts together for this, that in his last weeks she had visited him, and I had taken her into a side room and told her not to expect to see the grandpa that she knew, because he was very, very ill and he did not look anything like she would expect. She said she was very thankful that I did that, because she was stunned and shocked when she saw him. He was like a 1,000-year-old corpse, he was moving, and his eyes were yellow, and that is how she remembers him—she does not remember any of the good times. My sister, who lived close by, was with him most of the time, and she just sat by his bed and prayed for his heart to stop.

We were all shell-shocked when he did finally die. As I say, that informed the decisions that were made about suicide by my sister and brother. Had he been a farm animal, we would have been prosecuted for causing unnecessary suffering, but he was a man so he was not entitled to that sort of consideration. I remember him in that horrible ward breathing his last. The only time he moved in the last days was to cough up blood. For a man who had asked to be relieved of that burden, who had asked for an act of mercy, a week before, and it had been denied him—I cannot understand how anybody would deny a dying man a deliverance.

When my brother died, he and my sister-in-law had been together since they were 11 years old. He was only 53, so they had already known each other for 40 years. She had shared his suffering while he was being driven around the country looking for diagnoses and, ultimately, looking for doctors who would help him commit suicide. His weight had gone from 18 stone to 8 stone, and he was bright yellow as well. He was suffering all the time and she was suffering with him. She was relieved as well as grieving when he actually died—and then the police were at the door. The investigation went on until his inquest eight months later. The police were as helpful and sensitive as they could possibly be. Vicky got the impression that they wanted her to give the wrong answer—when they said, “Did you know what he was going to do?” she said, “Yes, I did”; to “Could you have stopped him?” she said, “Yes, he was weak as a kitten”; and to “Could you have resuscitated him?” she said “Yes,” because she had had some nursing training, and so on—and with every answer they just collapsed a little bit more.

Ultimately, at the inquest there was an anomaly in his suicide note. It was written in two different colours of ink, and the police investigated whether it could have been written at different times, possibly by different people. Giving evidence at his inquest, the police said that they thought his pen had run out—there was a squiggle at the top where it changed from black to blue—and they said that they were not proceeding with any idea that there had been positive involvement in his suicide.

I have a note of the transcript of what the coroner said, which reads: “I don’t want to make any more of this than I absolutely have to. I simply record therefore that Michael Malone took his own life. He did so quite deliberately and having made appropriate preparations, and so it’s not a case of my saying that he did so while the balance of his mind was disturbed, because it clearly was not. It was a decision that he took and I have every sympathy with that decision in so far as a coroner is allowed to say that.”

The police were very sympathetic. The coroner was very sympathetic. Danny Kruger is very sympathetic. But sympathy only goes so far, and I am glad that this Committee is now looking at exactly the people who matter first in this issue, who cannot be here to talk for themselves.

Liz Reed: In answer to the first point, about anything we would change or do differently, I think actually my brother’s case was dealt with really well and there were checks and balances along the whole way: “Does he meet the eligibility criteria?”—obviously—“but also, does he want to?” His wife was involved in the process with him, and he was checked constantly. A doctor administered for him, and he had met him already. He knew him and had a rapport with him. He had a few jokes with him at the end. So from that perspective, I do not think so. It is slightly different in Australia, in that it does not have to have a High Court judge, so the process feels a bit more streamlined than it is here, and maybe the access would be slightly different because of that.

In terms of the grief, I think anyone that knows someone who has been through a terminal illness knows that there is a level of anticipatory grief that comes with that—the waking up every morning thinking, “Has it been tonight? What happens next? What’s today?” Because when someone is in the final stages of their life, which my brother was, there is always something every day: “Oh, he’s got to have fluid drained from his heart today,” or, “Oh, this has happened.” There is always something, so that grief starts coming on before the person has even died.

The day my brother died we sat outside in the courtyard and had a glass of champagne. He chose a Bob Dylan song that he wanted to die to. It was extremely peaceful. It was seconds. And he got to say all the things, have all the conversations, speak to our parents—that sort of real American “closure”. That is what he got, and we were not sitting around thinking, “I wish I’d said this. I missed it,” or, “I was off doing something with the kids.” We were all there: my mum, my dad, me, his wife. We sat there and held his hand—and what a gift.

[Sarah Olney (Richmond Park) (LD)]

Q Thank you all for coming today and for sharing these really personal recollections. I have one question, but to both Liz and Julie, if that is okay. According to the notes that I have here—apologies if I have got this wrong—in both your brother’s situation and your husband’s situation, it was administered by the doctor. The Bill proposes that the person who has made the choice about ending their life should self-administer a solution. I am really sorry if this causes you any distress, but, on reflection, do you think that a self-administration regime would have made a difference?

Liz Reed: I do not think so, no. I do not think it would have changed his mind. I am someone who is real squeamish, so I probably would not want to, because of how I feel about all that kind of stuff, but it would not have changed anything for him—no, absolutely not. But I think there is a comfort in having a doctor there administering that, “This is going to go as it should,” and there is a calm that comes with that.

Julie Thienpont: Guy being intensely private, as I mentioned before, he would have preferred less people around him at the time. There were two nurses, the family doctor and the administering doctor. They prepared the scene and put the drips in—they had to put one in each arm—and they had to be there in order to witness the whole thing. He would have preferred to have been able to do it himself, but I do not think the fact that it was administered by somebody else impacted in a negative way for him.

[The Chair]

Pat, I think you wanted to say something.

Pat Malone: Yes. My sister died under the Swiss method, which meant self-administering a cup. She had motor neurone disease, and she was slowly losing the use of her limbs. She went earlier than she needed to because she wanted to be sure that she would be able to swallow and lift her arm. She could probably have put it off for some months—an indeterminate period—but she died before she needed to in order to be sure that she could self-administer.

[Sarah Olney]

Q The Chair has given me permission to ask a very quick follow-up, Pat, since you mentioned that. I am really sorry to ask this, but do you think that if it had been administered by a doctor, she would have chosen to live for a little longer?

Pat Malone: I cannot speak for her, but there were many, many problems. Bizarrely, the last package of documents that she sent to Dignitas got caught up in the postal strike, and they were all irreplaceable original documents. I do not know if you remember, but around that time—this was the winter of 2022-23—there was a postal strike, and it particularly affected international mail. For nine weeks, the documents were held up in a sorting office, and they could not find them. She was getting more and more concerned, because her horror was that she would miss that deadline. In actual fact, Dignitas agreed that in the final analysis she could hand carry the last of the documents she needed when she came to Switzerland, and she was still able, but her horror when she thought she was going to miss the bus was quite palpable. Yes, if a doctor had been able to do it, she might well have chosen that option.

[Sarah Olney]

Thank you for answering that.

[Dr Opher]

Q I have been fascinated by this discussion, so thank you all. It strikes me that we have spent a number of days looking at the other end of this, if you like—coercion and capacity and that sort of thing—but I am concerned that we had a judge with Parkinson’s who would not be allowed through this, like your sister with MND. I just think we should consider as a Committee whether we need to make any amendments on these things, and also on self-administration. I wondered whether you thought we should widen the Act. I presume you have read some of it, at least.

Pat Malone: As I mentioned to Mr Kruger, I am loath to meddle in any way with the Bill. I think that as it is the Bill is the best we can do at this time.

--- Later in debate ---

[The Minister of State, Ministry of Justice (Sarah Sackman)]

Q To be clear, I am here as a Government Minister on this Committee, and the Government are entirely neutral on the Bill, so we do not take a position on the substance of the issues you have raised. Clearly, the draft Bill is intended to apply in both England and Wales, as you say, and your note is extremely helpful in highlighting some of those issues that will need to be worked out. As a Government, we will work closely with the Welsh Government to assess the legalities and practicalities of any potential changes to the law.

You have highlighted in particular the distinctions between health law, which is a devolved matter, and the law on suicide, which currently is not devolved. On the first page of your written evidence, you draw out clauses 32, 31, 33 and 34 in particular as issues that we should focus on in ironing out those legalities. Is there anything else you want to add to that that you think that we as a Government should focus on in our work consulting with the Senedd?

Professor Lewis: I think it is important that both Governments understand how the implementation of what will be a pretty radical change in the law will happen on the ground within the health service and among those who are responsible for delivering social services. I am thinking of issues such as adult safeguarding, which in Wales has its own specific law and is slightly different from the arrangements in England. There are those kinds of nuances between the two territories, and I think it would be prudent to focus on them.

I also think it is wise to bear in mind that Wales has certain statutory bodies whose interests might extend to the Bill. For example, there is the Older People’s Commissioner for Wales, in particular; there is the Future Generations Commissioner for Wales as well. I think it is important that there is some forum, some scope, for those people also to be involved in how this is shaped.

[Sarah Olney]

Q Dr Price, I am really glad that we are able to have the Royal College of Psychiatrists in front of us today; thank you for making the time. I want to ask you about paragraph 11 of your written evidence, which states that it is the royal college’s view that the Mental Capacity Act

“is not sufficient for the purposes of this Bill.”

Could you expand a little on that and, if you feel able, make some recommendations as to what you think could be sufficient?

Dr Price: Thank you. In answering this, I will also refer back to Professor Gareth Owen’s oral submission, thinking about the purpose that the Mental Capacity Act was drawn up for and the fact that decisions about the ending of life were not one of the originally designed functions of it. We would need to think carefully about how that would then translate into a decision that was specifically about the capacity to end one’s life.

We also need to think about how that would work in practice. When we are thinking about capacity assessments, it is usually related to a treatment or a choice about a treatment or about somebody’s life—for example, changing residence. Psychiatrists and doctors and actually lots of professionals are very used to those sorts of decisions and have gathered a lot of knowledge, expertise and experience around it. This particular decision is something that in this country we do not have knowledge, expertise and experience in, and we therefore need to think about how that would look in practice.

As for advice to the Committee about what that might look like, I think that we need to gather what evidence we have—it is actually very thin—from other jurisdictions that think about capacity as part of this process. I am thinking about my PhD: I visited Oregon and talked to practitioners who were directly involved in these sorts of assessments. They described the process, but they are not using the Mental Capacity Act as their framework. They described a very interpersonal process, which relied on a relationship with the patient, and the better a patient was known, the more a gut feeling-type assessment was used. We need to think here about whether that would be a sufficient conversation to have.

One of the things that I have thought quite a lot about is how we can really understand the workings of a mental capacity assessment, and one of the best ways we can do that is to see who is not permitted to access assisted suicide because of a lack of capacity and what that assessment showed. We do not have data because the assessments for people who were not permitted to do it are not published; we cannot read them, so if this becomes legislation, one of the suggestions that I would have—it is supported by the Royal College of Psychiatrists—is to, with patients’ consent, record capacity assessments to see whether they meet the standard that is necessary. I think it is important to set out the standard necessary and the components needed to be confident about a mental capacity assessment. That will help with standards, but will also help with training, because this is new territory for psychiatry, for medicine, and to be able to think about consistency and reliability, training needs to actually see a transparency in capacity assessments.

[Dr Tidball]

Q This is a question for Dan Scorer. I have worked with a learning disability charity, My Life My Choice. I have done a lot of work with that charity on self-advocacy in the context of healthcare, so I am really keen to hear from you. We know there are excellent initiatives that focus on supporting people with learning disabilities to engage with advanced care planning, so that their preferences at the end of life can be respected. I just wondered whether you could share some lessons learned, particularly in relation to giving people with learning disabilities a voice and an opportunity to talk about what matters to them at the end of life, and say, as part of that, what we could incorporate into the regulations that are being developed as part of the Bill.

Dan Scorer: There are two key concerns I will touch on. One was covered just at the end of the last session, with the question about preliminary discussions, and that is certainly a key area that we have concern about, about how that initial conversation is initiated and structured. For us, that really leads into a conversation around rights to advocacy. It would be extremely concerning if people with a learning disability who were terminally ill were not fully prepared and supported for that discussion.

For us, this links into the experiences that we had during the pandemic, which were touched on in yesterday’s evidence session by Dr Griffiths and others. We had people with a learning disability who were being consulted by medical professionals about “do not resuscitate” or “do not treat” decisions, and they were not being properly prepared for or supported in those discussions. Indeed, in one of our own care services, we had someone we support who was called up by a GP and asked whether she would want the kiss of life. The GP was trying to explain it to her excessively and she said, “No, of course not. I would not want to be kissed by someone I do not know.” Potentially, a “do not attempt CPR” notice was put in place. That example just shows the importance of preparing and supporting people for such discussions, so we want to see a right to advocacy included within the Bill to support people considering their end-of-life options.

Also, building on the previous question about the adequacy of the Mental Capacity Act, there is a question about the adequacy of training, awareness and compliance with that Act now. That is a huge issue that has been addressed, for example, through the Oliver McGowan mandatory training on learning disability and autism, which is rolling out across the NHS and social care services at the moment. However, in addition to the MCA, we also need to make sure that clinicians fully understand the Equality Act and the NHS accessible information standard about rights to information and support for disabled patients.

On clause 5, on training, we want to see much more specificity about the level of training that clinicians would have around the Mental Capacity Act and to make sure that they are fully aware of their responsibilities to make reasonable adjustments for patients, and to support them with understanding their choices around end-of-life care, which could include assisted dying.