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

Sojan Joseph Excerpts

Committee stage
Wednesday 29th January 2025 Public Bill Committees

[The Chair]

Just before you answer, I bring to the attention of Members that we have about 13 minutes left and five people who want to ask questions. I ask Members keep their questions as tight as they can, and the witnesses to take that into account as well—otherwise I will regrettably end up cutting witnesses off at spot-on 3 o’clock.

Dr Mullock: I will answer very quickly. Informed consent needs to direct what happens if the procedure does not work quickly. There is a very rare risk that the patient might regain consciousness and not die. This is incredibly rare, but nevertheless patients should be informed about that risk. Obviously it is not practical for doctors to remain with people for three or four days. I do not know the risk of this happening, but whatever approach is taken clinically needs to make sure that the risks are minimal and that patients are provided with an informed-consent approach to what might happen if things do not go as planned.

Professor House: It is a striking feature of the Bill that informed consent is not really specified properly. The doctor is required to ask the person what they want to happen in the event of complications without having previously explained to them what all the complications might be. They ask them what they want to happen, but there is no requirement then to discuss what might happen in line with their wishes.

The important element of this comes when you think about the mechanisms that might come into play here, particularly the use of what is called a medical device—a syringe driver. In other jurisdictions where this happens—Victoria and Canada, for example—a doctor steps in with a lethal injection, which is not allowed here. They call it “physician administered” in Victoria. It is not specified what assisting somebody with the use of this medical device might mean, particularly if they are so disabled that they need a proxy to sign the forms for them, or if they are now slightly impaired by having taken some medication.

All that needs much tighter specification. There is no standard informed consent form related to the Bill, for example—of the sort that you would expect to sign if you were having a serious intervention in the NHS. The schedules—the forms that people will sign—do not, for example, say that they have had all the complications explained, and the side effects, or what any subsequent intervention might be. You are putting your finger on something that is very underspecified in the Bill.

[Sojan Joseph (Ashford) (Lab)]

Q May I come to Professor House for clarification? For someone who has had no primary diagnosis of a mental illness got diagnosed as terminally ill, is there the possibility that that condition could make them feel depressed or hopeless? At that stage, can that influence their decision-making capacity?

Professor House: It is certainly true that depressive states and depressive disorders are much commoner in people with severe physical illness than they are in the general population. Since there is not a lot of evidence that those depressive disorders cause the severe physical illness, we can assume that the depression is a response. About 20% or 30% of people are likely to have significant depressive symptoms.

We did a study in people after stroke, for example, and found that 10% of them were saying that they now thought their life was worthless and no longer worth living, and yet only a tiny proportion of those people go on to suicide. We must be able to look at the factors that protect people in that sort of situation. Yes—I think your question was, “How common is it, and is it a response to the circumstances and the illness?” The answer is yes, it is.

[Dr Simon Opher (Stroud) (Lab)]

Q First, I work as a GP with old people—I look after a nursing home— and I have to do adult safeguarding training every year. Secondly, more than 90% of psychological assessments are done in primary care. Professor Esmail, do you think that GPs are capable of spotting coercion and doing a psychological assessment?

Professor Esmail: Coercion is a difficult one, but absolutely, with all the provisos people have talked about and how sometimes it is hidden and all that sort of stuff, but I think we are always thinking about it —absolutely. Even when someone comes in and, as I said, asks for lasting power of attorney, it is definitely at the forefront of my mind as to who is making them do this, why and so on.

For psychological assessment, yes, as you said— but not only psychological assessment. Something like 52% of people choose to die at home, looked after by their GP, so in terms of palliation—I mean, I know people talk about how terrible things are, but it is also provided very well for the vast majority of people, who do not end up in the situations that people have been talking about. We do need to have perspective.

Yes, I absolutely think GPs have the skills to make those assessments and are doing them all the time, in a way. We now work as multidisciplinary teams, so we have access to a lot more information and expertise within our wider team to help us with those situations. The team is in a way very well placed for that, yes.

--- 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.