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

Debate between Lewis Atkinson and Tom Gordon

Committee stage
Thursday 30th January 2025 Public Bill Committees

[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.