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

Debate between Lewis Atkinson and Rachel Hopkins

Committee stage
Thursday 30th January 2025 Public Bill Committees

[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.

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

Debate between Lewis Atkinson and Rachel Hopkins

Committee stage
Tuesday 28th January 2025 Public Bill Committees

[Lewis Atkinson]

Q I think around 650 people with a terminal illness currently take their own lives a year. If we see a success with the Bill, I wonder whether there would be a reduction of that number going forward. Do you think that could be incorporated in monitoring going forward? Do you think there are opportunities to avoid that suffering? People are clearly experiencing traumatic deaths at the moment.

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 want to build on the comments about the multidisciplinary teams that you all work with. The chief medical officer said, in one of the sessions earlier, that discussions about death, dying and end of life are increasing. They are getting better. However, importantly, when we heard from Professor Ranger of the RCN and from the Association of Palliative Care Social Workers, they also talked about the conversations that they have, as part of the wider team. Quite often, it is nurses having those conversations.

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.