Terminally Ill Adults (End of Life) Bill (Twenty-seventh sitting)

Debate between Sojan Joseph and Sean Woodcock

Committee stage
Wednesday 19th March 2025 Public Bill Committees

[Sean Woodcock]

I understand. I have said what I need to say on the amendment. I believe that it is relevant. I take your advice, Mrs Harris, but I commend it to the Committee.

[Sojan Joseph (Ashford) (Lab)]

I rise to speak in support of these important amendments. The prescribing, dispensing and transporting of these medications is very important. In my experience, and as the Care Quality Commission reports, many healthcare settings have issues with the storage and disposal of medications. Amendment 442 is a straightforward one that would change “may” to “must”. I think it is right that the Secretary of State “must” by regulations make the provisions listed.

In oral evidence, we heard of one incident in Australia where the patient was given medication and did not take it but passed away, and then her partner took it and died. Amendment 444, which would provide that the substances must not be left unsupervised by a medical practitioner at any time, is very important. I urge the Committee to accept it, and amendment 445, which would also change a “may” to a “must”. These are straightforward but important amendments that seek to safeguard relatives, staff and the public. We must not leave these medications unattended at any time.

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

Debate between Sojan Joseph and Sean Woodcock

Committee stage
Wednesday 29th January 2025 Public Bill Committees

[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.