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

Jack Abbott Excerpts

Committee stage
Wednesday 29th January 2025 Public Bill Committees

[Sean Woodcock]

Q Mr Royston, I am interested in what you had to say about palliative care and poverty. A concern of people who have spoken to the Committee has been the impact of introducing assisted dying in an era when palliative care is so patchy. Often, someone’s finances and personal income are linked to the level of care they get. Can you explain the impact that concern about finances has on dying people, from your experience?

Sam Royston: The impact on dying people can be deeply profound. I have spoken to people for whom it is difficult to even afford to put food on the table, and who are struggling to turn the heating on. There are people struggling to even power medical equipment in their home as a result of facing poverty at the end of life.

Let us remember that, particularly for people of working age, there is a double pressure here. Not only can terminal illness come with additional costs because, for example, many people require their home to be kept warm and need to buy special food and so on and so forth. For many people, their income reduces as well as a result of the person who is terminally ill leaving employment, or their partner doing so in order to care for them. Those double pressures are pushing people living with terminal illness into poverty. Inevitably, that affects their view of the way in which they live their life and their quality of life as a whole.

There are some basic things that need to be done to address this. For example, we pushed for a long time for people who are unfortunate enough to become terminally ill at working age to be entitled to receive a pensioner level of income. At the moment, if you have no other income, you can rely on receiving your normal working-age benefit entitlement, but having that pensioner level of income would provide an opportunity for retirement for those people who are unfortunate enough to become terminally ill in working age. So far, basically, it has been said that it is unaffordable. In the context of discussions about what needs to happen to improve the end-of-life experience for everyone, I think it is pretty critical that we do something big to address poverty at the end of life.

[Jack Abbott (Ipswich) (Lab/Co-op)]

Q Sorry, Mr Royston, but I am coming back to you with a similar question. I do not think anyone on the Committee or, as Mr Porter mentioned, anyone who took part in our recent debate would disagree about the pretty awful state of palliative care at the moment. You are absolutely right to mention poverty and its impact on health and social outcomes. I am very sympathetic to the broader arguments you are making, but I want to direct us specifically to the Bill, because that is why we are here now. In your view, is the Bill problematic or otherwise, for some of the reasons you outlined? Will it fundamentally change any of the outcomes that you mentioned? I agree that we need to improve the situation regarding the number of people living in poverty, the state of palliative care and everything else, but what sort of change specifically do you think the Bill might make?

Sam Royston: In the context of the Bill, I am a bit disappointed. From what I can see, there are two mentions of palliative care. One is a requirement in the initial discussion for a doctor to tell somebody what palliative care is available—not whether there should be any available palliative care, but whether it is available. That could be, “No, there is nothing available, I am afraid.” I think that is inadequate.

The second reference is to having an assessment of the availability of palliative care after five years. I do not know why we are waiting five years after the Bill becomes an Act for an assessment of the adequacy of palliative care. We do not have such an assessment at the moment, and we absolutely need one. That is why we have recommended an additional clause that requires an assessment of the availability of palliative care, and a long-term funding strategy to enable that to be put in place. There are substantive things that could be done to the Bill to improve it in that regard.

[Jack Abbott]

Q I sympathise totally with what you are saying about palliative care, but the principle of assisted dying is the main thrust of what we are debating. Will the principle of assisted dying, should it be introduced, fundamentally change, positively or negatively, many of the things that you have been describing?

Sam Royston: I have heard on occasion this idea that we are dealing with assisted dying, and palliative care is another issue. To be honest, I am a bit tired of the “jam tomorrow” argument that says, “We will sort this out today. Palliative care is important, but we will sort that out another time.” We need to get palliative care sorted out and improved right now, as part of the Bill, because they are fundamentally connected.

This Bill is about choice. It is about choice at the end of life. If people cannot choose to access palliative care, they cannot make a free choice about the care and support that they receive. They cannot make a choice about whether they can get the pain relief that they need. They cannot make a choice, often, about where they would rather die. They cannot make a choice about who they have around them at the end of life. They cannot make those choices if they do not have access to proper palliative care and the support that they need. That is why I would say that the issue of palliative care is intrinsic to the Bill. The two are fundamentally connected. You cannot have one without the other.

[Jack Abbott]

Q I have a short final question. Is Marie Curie’s position basically that if palliative care does not improve, assisted dying should not be introduced in this country?

Sam Royston: We are neutral on the question of whether assisted dying should be introduced. We are not neutral on the question of whether palliative care should be improved.

[Kim Leadbeater]

Q Thank you, witnesses, for joining us this afternoon. The good news for us all, on the palliative care conversation, is that we have in the room the Minister responsible for palliative care, who has heard those arguments loud and clear. Indeed, Second Reading showed that there is a huge amount of good will in the House for improvements in palliative care. I agree with you, Mr Royston, that it is not an either/or. We have to do both, and I think this House is very keen and prepared to do both. Hopefully, the implementation period will provide some reassurance, because this will not happen for a number of years. We have got time to make those improvements alongside each other while still giving terminally ill people the choice that I firmly believe they deserve.

Dr Neerkin, on that point, yesterday we heard a range of views from palliative care professionals, and there are a range of views within the sector around assisted dying. Could you tell us a bit about your views as a result of your more than 25 years of experience as a consultant physician in palliative medicine?

Dr Neerkin: First of all, death and dying is not owned by palliative care. We are hearing a lot about palliative care, but we have also heard from GPs that they deal with a lot of death and dying, as does every other speciality. So first of all, we do not own death and dying. I think a lot is being put on palliative care, and palliative care is not a panacea for everything at the end of life. This is multifactorial; it is about good medical care, good social care, good care in the community and everything that can be provided for people of all backgrounds and all abilities and disabilities. I think that is really important to begin with.

I am very lucky to work in a trust that has a huge amount of backup for palliative care, interventional pain control and psychology. We have great backup to provide great end of life care, which is not available all across the country. Despite that, there is still a need for assisted dying, because that does not answer every single question. What I have seen over the years is that people want some control when they lose all other control and they do not feel dignified. It is not just about being a burden; they do not want their loved ones to see them suffering and to lose all dignity in front of their loved ones, as they are doing. As we see in other countries, people want to have that choice. It does not necessarily mean they will take it up in the end, but to know that they can choose assisted dying is incredibly important to them, and it gives them advocacy and a bit of autonomy and control where they lose control.

Those are the questions that are brought to me when people say, “Can you not just hasten this death?” People just want to have the conversation around it. Even if I were to say to them, “If I had a tablet here and now that I could give you, would you take it?” probably eight out of 10 times people would say no, because inherently people have a will to live. We are talking very much about dying and people wanting to die, but most people I treat and most families really want their loved one to live. It is just about being able to have the choice and feeling that, if things become unbearable for them, or they feel they have lost all dignity and all control in a situation, they have got a bit of control left.