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

Sean Woodcock Excerpts

Committee stage
Wednesday 29th January 2025 Public Bill Committees

[Jake Richards]

Q Would the decision about the need for a psychiatric assessment be undertaken by a medical clinician?

Professor House: In the circumstances you are talking about—generally, yes.

[Sean Woodcock (Banbury) (Lab)]

Q Dr Mullock, during your oral evidence to the Health and Social Care Committee you recommended focusing on Oregon’s approach in particular. Do you have any concerns about the number of people in Oregon who cite being a burden as their reason for choosing assisted dying?

Dr Mullock: I think this is incredibly complicated, because people will have multiple reasons for choosing to seek an assisted death, and that might be one of them. For some people, there is an argument that their experience of feeling like a burden is really overwhelming. If you have been a very independent and active person, the impact of being and feeling like a burden will be so devastating, so in addition to having a terminal condition that is going to end your life soon anyway—and all the pain and fear that that might bring—there is that additional reason.

I do not think we should necessarily say, “Oh, well, that is really problematic there—we can’t engage with the reasons people feel like a burden.” Obviously, feeling like a burden does not mean that people are finding you to be a burden. The questions about whether those caring for you are caring for you well, or whether you are a victim of abuse, are all tangled into the very difficult experiences that terminally ill people have.

[Sean Woodcock]

Q I accept the point. My challenge would be that we have heard a lot of evidence from a variety of people, and I think it is generally accepted that there is a difference in the availability of care across the country, particularly for people of certain ethnic backgrounds or who are deprived, which means that someone could be at particular risk of feeling a burden if they are a member of those groups. This is at a time when care is in the state it is in, and we are often reliant on people having individual property and using it to pay for their social care. Do you not see that as an inherent risk of introducing the Bill?

Dr Mullock: It absolutely is a risk, but I think the Bill can be constructed in a way that minimises that risk. The Bill as it stands before the amendments is pretty rigorous, but with amendments we should be able to minimise that important risk as far as possible. If we think about what happens at the moment, just because people cannot legitimately and lawfully seek assisted dying in this country, it does not mean that they are not subject to the pressures of feeling like a burden and having a terrible time.

Social care and palliative care availability is a separate issue. It is really important, but it is a distinct issue. Although it is a powerful argument to say, “We don’t have excellent palliative care provision in this country and end-of-life care is not where it should be, and therefore we cannot allow lawful assisted dying”, it is also really problematic, because unless we are going to create absolutely brilliant palliative and end-of-life care, we can never empower people to make the choice about how they end their lives. That is really problematic, because you are then saying, “ We’re forcing you to endure this imperfect, substandard system, and we can’t allow you to choose an assisted death because the system isn’t very good.” It is a really difficult and complicated set of arguments.

[Sean Woodcock]

I was merely suggesting that the direct evidence from Oregon is that being a burden is something that might come from a lack of decent social care, and it might be encouraging people to make the decision to seek assisted dying—but fair enough.

[Daniel Francis (Bexleyheath and Crayford) (Lab)]

Q My question is to both Dr Mullock and Professor House. In your written evidence, you both refer to clause 18(9) and issues regarding the obligations of the doctor if the procedure either fails or if there is a long-delayed death. I accept that it is a small number, but we know from elsewhere that there are cases where the death takes some days—three to four days in some cases—or where the procedure fails.

The Bill says that the doctor must stay with the person for the entirety ofthat time. I am trying to understand from your written evidence how you feel that measure should be amended to make it stronger, because at the moment there is no mention what the doctor should do to intervene, and clearly it is not practical for a doctor to stay for three to four days. What are your views on how that could be amended?

--- Later in debate ---

[Jake Richards]

That is welcome.

Dr Graham: I think the judicial safeguard strengthens the convention compatibility because of the argument relating to Mortier that was set out earlier, but I do not think it is essential for convention combability because of the case law I mentioned earlier.

[Sean Woodcock]

Q Ms Hadi, at the start you said, “Nothing about us without us.” With regard to your previous testimony, I am interested to know how you feel that disabled voices have been heard, if they have been heard, in this process. What gaps have there been, if any? What can the Committee and the Bill do to fill those gaps?

Fazilet Hadi: To build on what Baroness Falkner said earlier, if this had been a Government Bill, we would obviously have had some pre consultation: we would have had a Green Paper and a 12-week consultation period, and we might have had engagement sessions with disabled people. The responses would then have been fed back, and we would then have heard about what the Government were going to do next. Obviously, because it is a private Member’s Bill, none of that has happened. I think there was a call for evidence at the beginning of January, but there was no time period, no framework and no accessible information.

Given that this Bill affects disabled people really, really profoundly—as I said earlier, disabled people often live with conditions that will become terminal illnesses—I feel that it has not been sufficient, and I would like to see much more discussion with disabled people and disabled people’s organisations. Ideally, I want to see the process that Baroness Falkner talked about happen, ideally with a commission and a Government Bill. If the Government are committed to this private Member’s Bill and want it to happen, they should take over and make it a proper part of their legislative agenda.

No, I do not think there has been sufficient dialogue and input from disabled people to this day. Having said that, the first we knew of this Bill was in October, it had its Second Reading on 29 November, and now we are here, so it has been so quick. A lot of disabled people—because we have sensory disabilities, learning disabilities and so on—need a bit more time to input. Thank you for the question.

[The Minister for Care (Stephen Kinnock)]

Q I want to make a brief point of clarification, based on what both Baroness Falkner and Ms Hadi said. In the debate on the motion on the money resolution in Parliament last week, I stood at the Dispatch Box and confirmed that the Government will publish an impact assessment before Report stage. We are obviously working on that with officials.

I will also add as a point of clarification that both myself and my ministerial colleague are working with the sponsor of the Bill to provide assistance and advice, purely on the workability and operational aspects of the Bill, and impacts of the Bill, should it gain Royal Assent. It is important for the purposes of this discussion that everybody is on the same page on that point. The Government are absolutely remaining neutral on the principle of the Bill, but it is our job to ensure that any Bill that passes through Parliament is workable and implementable as and when it gains Royal Assent.

Baroness Falkner: Will there be a human rights compatibility assessment as well as a delegated powers memorandum? Those are the other things that Government-sponsored legislation would have contained.

--- Later in debate ---

[Sojan Joseph]

Q I would like to come to you, Dr Hussain, specifically on why you think ethnic minority people would be disproportionately affected when the law is the same for everyone. There will be capacity assessments. There will be two medical assessments. There will be a court review. If you think that is going to be an effect, what would you suggest we include in the Bill to safeguard those people?

Dr Hussain: First, we need to understand the current context. We know already that people from ethnic minority groups and those who come from socioeconomically deprived backgrounds are less likely to access palliative care, they are less likely to say that the care that they have received at the end of life was good and they are more likely to have poor outcomes—that is, they are more likely to die in hospital and spend more time in hospital in the last year of life. What drives that are multiple reasons, but not least discrimination.

We have heard about ableism, but racism is also a specific issue within palliative care. We did a survey, post-covid, of staff across the nation working in palliative care. More than 1,400 people responded. The vast majority—more than 80%—were white British, but 40% said that they had witnessed or experienced racism within the end-of-life care sector. For ethnic minority groups, that is much higher. That leads to mistrust. I work in Bradford. We have lots of patients who are ethnically diverse in the hospital. Almost every week, one of the first things I have to reassure patients about is that I cannot legally do anything to shorten their life. This is front and centre of the fear for those patients and we see it all the time.

What happens when we add assisted dying into that context? I work deep within community groups; with not only ethnically diverse communities, but those who are socially disadvantaged. I have taken this Bill to them and they have made it really clear—this is not just one community, but several, and I am not speaking on my behalf, but on theirs—that they are really fearful because this is what happened to them in covid. It affected everyone, but it affected some communities disproportionately because our services are not equitable. That could profoundly affect their healthcare, and not only in terms of end-of-life care. They are saying, “We will not even come to hospital ourselves, because we are worried that this would happen.” This is not an academic or theoretical risk. We saw it happen in covid in Bradford. There were communities so worried that their loved ones were dying in hospital that they stayed at home and died earlier. It is not a theoretical risk.

They also identified people within the community who they thought would have assisted dying but, invariably, without exception, every single one of those cases was from the most deprived and disadvantaged people in their community. With the 40-year-old woman who had lost her children, is sofa-surfing and an alcoholic, and had recently been diagnosed with cancer, they said, “She probably would want to go for it,” but that is because she cannot get the mental health and social care support she needs. I do not think it is clear. Would I have to safeguard that person and get her that support or, as these communities asked me, would the only thing on offer be assisted dying? It has really profound implications for these communities.

We only have to look at covid and vaccine hesitancy. As you said, that was a brilliant intervention and highly effective, but it disproportionately impacted these communities. That is why my recommendations—I will put them in writing—are that we have not only to strengthen the Bill but to strengthen those conditions. I think it is manageable, but it takes a different kind of leadership. That is probably the key thing, but I genuinely think we can get there.

[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.