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

Naz Shah Excerpts

Committee stage
Wednesday 29th January 2025 Public Bill Committees

[Sarah Olney]

Q There is no evidence that it reduces it, so it continues at the same rate: it does not increase, and it does not reduce. Is that what you are saying?

Professor House: Well, it increases, but there are so many factors. I will give you one example. Oregon has been widely cited as a model for this sort of thing, although people have been a bit more uncertain in recent times. At the time that Lord Falconer introduced his Bill in the Lords in 2014, Oregon was cited as a place where levels had stayed much the same—not of suicide, but of people receiving assisted dying. In the decade since then, the number of people going through the assisted dying programme has gone up 500%, and the number of suicides has gone up 20%.

[Naz Shah (Bradford West) (Lab)]

Q Professor House, you have said that people applying for assisted dying may be in a state of vulnerability. What is vulnerability and how can the Bill be amended to make sure that vulnerable people do not inappropriately choose assisted dying?

Professor House: Vulnerability is not just an inherent characteristic of individuals. It is the presence of these external factors, circumstances, and internal factors, state of mind, that influence and bias somebody’s thinking about whether their life is worth continuing with and whether they want to end their life. Its importance is that exploring those factors and considering what can be done to ameliorate them can lead to a change of mind. If we do not explore those factors and we do not attempt to ameliorate them, we are losing an opportunity to change the mind of people who may rethink their desire to end their life.

Why I think of it as a vulnerability, rather than just as factors that influence a rational decision, which feels rather like how it is considered in the Bill, is that the emotional tone of the discussion that you have with people about all those factors is negative. They are not people asserting autonomy and pleasure in their ability to make a choice; they are people describing to you things that are negative influences on their life. The worry is that because there is nothing in the current medical assessment that requires a careful exploration of these factors, there is really no opportunity to change them.

[Naz Shah]

Q Richard, thank you for coming in at such short notice. It is very much appreciated. Do you have concerns about whether the safeguards in the Bill adequately protect against coercion and vulnerability as Professor House has just described?

Richard Robinson: Yes, we have concerns. I understand there is a potential amendment around ensuring that training and extra safeguarding elements are added to the Bill. We would be very supportive of that. As I have already said, while we have concerns, we also need to weigh that up around the notion that older people deserve the same kind of independence and autonomy as any other demographic. Therefore, the notion of vulnerability only extends to a proportion of those people who are older. Not all older people are vulnerable; it is important to say that.

I have already said in an answer to another question that we are very concerned that the knowledge of even the notion of the abuse or coercion of older people is not widespread across the UK. If anything, that is getting worse rather than better, so this Bill really shines a light on a microcosm of society. We could be working together more adequately to ensure that older people are better represented, from an abuse and a coercion perspective, to ensure that any decision making is done within a safeguarding context. We are some way away from that at the moment.

[Naz Shah]

Q Finally, to Dr Mullock, you have said that in all jurisdictions that have legalised assisted dying, the only meaningful gatekeeping is done by medical professionals. We only have retrospective monitoring that is primarily reliant on honest reporting, particularly discovering whether, or how frequently, coercion or flawed assessment has led to inappropriate assisted dying, and therefore challenging it, so it is impossible to know how many people have been sacrificed with lawful AD regimes. We have witnesses who have said there is no evidence of coercion, especially in examples in Australia and some US states where some assisted dying schemes have been implemented. When they say that, do you think they are being accurate?

Dr Mullock: I am sure they are being accurate in terms of the data before them. The problem is that it is difficult to know and, as Richard Robinson has pointed out, this is a hidden problem. In terms of the Bill that we are discussing, one possible weakness here is that it identifies, only very obviously, problematic conduct in terms of coercion or pressure exerted by another person, and actually the kind of undue influence that might occur might be very subtle. More needs to be done to recognise that and the subtle encouragement that might take place, where a relative might frame their support for the person seeking to die in terms of, “This will be better for you,” and, “Have you considered this?” That is not necessarily an example of clear abuse, so when the person seeking to die then consults the doctor, they are not going to characterise what has happened to them as coercion or abuse. More needs to be done to discuss with the person whether or not they have been encouraged by the people around them.

[Bambos Charalambous (Southgate and Wood Green) (Lab)]

Q This is a question to Professor House. I know you are opposed to the Bill, but if it were to pass, what role do you see for psychiatrists in a multidisciplinary approach?

Professor House: It is a difficult question, isn’t it? I have already said that there is an element of assessment that is needed here—that is not currently acknowledged very much in the Bill—of somebody’s psychological state. I say “psychological state”, which has these elements to it, one of which is the presence of diagnosable mental disorder—the top of the list of importance is depression, which is well known, particularly in the elderly, not to be that easy. Older people do not express distress necessarily as openly and obviously as younger people do. There is an element of the psychological bit of assessment, which you could call psychiatric assessment, that attempts to identify and diagnose mental disorders, particularly depressive disorders. That is particularly difficult in the elderly because they are sometimes what is called “masked”. There is then the element, which is mentioned in the Bill, of the difficulty at times of judging somebody’s mental capacity. The trouble with the ideas of incapacity and coercion, both of which float around a lot, is that they suggest a very high threshold. There is this middle ground, which we have just been hearing about, with a degree of impairment of judgment, or bias in judgment because of what is going on. Those are the sorts of areas where you would want a mental health professional and probably a psychiatrist, but a psychiatrist with a particular interest in this sort of area.

--- Later in debate ---

[The Chair]

I am sorry—just bear with me. Seven people wish to ask questions, and we have just half an hour. If you do answer, can it be very succinct if possible?

Fazilet Hadi: Thank you. I just wanted to support the Baroness, and also say that we believe the Bill will pose a challenge to protected characteristics, particularly of disabled people—and indeed other groups, because disabled people are LGBTQ+ and are black and minority ethnic. The equality journey for disabled people is relatively recent in this country. The Disability Discrimination Act was only passed in 1995, and the Equality Act was only 15 years ago. We are a country that is unequal—that has internalised ableism against disabled people—so I do think the Bill will have a serious and profound negative impact against the valuing of disabled people’s lives.

[Naz Shah]

Q I have one question following up with Baroness Falkner; then I will come to you, Fazilet, if I may. The Equality and Human Rights Commission’s briefing says that

“to ensure that assisted dying is compatible with Article 2 and Article 3 rights…high-quality palliative care should be available to all who need it.”

Given that there is no requirement of an assessment of the availability of palliative care before the Bill is passed, how certain are you, Baroness—and how certain do you think we can be—that in passing this Bill, article 2 and 3 rights are not being breached?

Baroness Falkner: Forgive me; I should have been clearer about that. That was what I was referring to earlier. We have quite a lot of evidence. Marie Curie published a “Better End of Life” report in 2024 that talked of

“patchy and inconsistent provision of care”.

There is regional variability. The Care Quality Commission and Hospice UK have raised the issue of poorer access to palliative care for people with learning disabilities. In 2022, Marie Curie also highlighted the issue of cultural and ethnic inequalities. That is why an assessment at this point in time, before MPs have a definitive vote on the proposals, would be the right thing to do. It would also increase public confidence in the Bill. We think that public confidence in the measures being proposed would be profoundly important to people’s trusting that doctors and judges will also be mindful of their responsibilities in an adequate manner where terms are not clearly defined.

[Naz Shah]

Q Fazilet, doctors are members of a caring profession, but there are ways in which—wittingly or unwittingly—they can end up coercing disabled people; there are reports of that. Would I be right in saying that? If so, how does this happen and how common is this experience for disabled people?

Fazilet Hadi: Disabled people share their stories with us and other organisations. I am sure that doctors are a mixed bag, like all of us, but our experience of the NHS and of the medical profession is not wholly positive. We often find that doctors, because they cannot treat or cure us, do devalue our lives. We have had disabled people who have actually had it suggested to them or their families that their lives are expendable, when actually those people have got a lot of years to give.

We also know that when you acquire disability, which most people do—most people are not born with one—it is absolutely frightening. I am sure that most of you would be absolutely frightened to be blind; it is not something you are going to die of, but you will have that fear, because you are not used to it. Whenever you acquire a disability or that disability gets worse, you will have fears, and I suppose that makes what doctors say even more important.

If doctors are not on our side because they are thinking, “Should we mention the fact that they could have an assisted death?”, that poses a big cultural issue for the NHS, but also for us having confidence in the NHS. I actually find the NHS to be one of the organisations and institutions in this country that is least comfortable with disability; honestly, I could probably get better equality at my railway station. I say that because I think doctors have a very medical model—of course, we welcome that: they want to cure, they want to treat. But they do not always have the empathy to understand that some of us lead really good, fulfilled lives with the most complicated health conditions or impairments.

Treating doctors as absolutely scientific and the fount of all knowledge: I think those days are gone. On giving them the powers to steer us towards assisted dying, I should say that they are not a group always on the side of people with disabilities. I am not really picking on doctors. To be honest, society has a lot of internalised ableism, and doctors are just part of that wider society.

[Lewis Atkinson]

Q I have a question for Baroness Falkner. I want particularly to probe the socioeconomic duty. What is your assessment of that as it relates to agency and control at the end of life? My constituents in Sunderland, unfortunately, are on average notably less well off than the rest of the UK. Is it not the case that at the moment there is choice at the end of life for people who are well off and able to travel to Switzerland, but poorer people do not have that choice? What is the EHRC’s view from a socioeconomic point of view?

Baroness Falkner: For clarity, a socioeconomic duty has not been incorporated. It is the current Government’s intention to incorporate that part of the Equality Act, but it has not been incorporated so we are not looking at it through that specific prism. But you make a very valid point because inequalities in healthcare, housing and all the associated factors that play into good health and wellbeing are there, and they exist palpably—even across geographical parts, from one bit of an area to another. They play actively into it.

Ms Hadi will be able to give better testimony than I could on this but, from what one understands, GP provision and general access to healthcare are poorer where demographics are poorer than it is in the better performing parts of the country. One other factor to consider in terms of a postcode lottery is that people in wealthier parts of the country tend to be more highly represented in private healthcare than in public healthcare and use of the NHS. That also impacts their choices and the care they get.

Fazilet Hadi: On health inequality, I take your point about how some of us can afford to fly off to Switzerland and some cannot, but some of us live in boroughs where we will die 10 years earlier and some of us have learning disabilities and might die 27 years earlier. I know you are looking at clauses, but this Bill will go into the real world, and that is what is happening in the real world—people are not getting social care and not getting palliative care. They are dying earlier. More poor people will die earlier and more poor people will have fewer options, fewer choices, less nice homes and fewer facilities to support them. As Baroness Falkner said earlier, they will unfortunately have insufficient social care and palliative care. When we are looking at inequalities, we need to note that this Bill is going to be plunged into a society that has deep, entrenched health inequalities that do not play out well for people who are poorer.

--- Later in debate ---

[The Chair]

Order. I repeat that we have about 15 minutes left and four people left to ask questions, plus the previous question. Could hon. Members appoint who might answer the question? I do not want to cut off witnesses right at the end; it would be rude to do so. Who wants to take that question?

Dr Hussain: I will take that one. As I have said, in Bradford I have been going into the communities and meeting them in community groups where they already meet—it is their safe space. Over the last three to four years, we have done a series of workshops just opening it up: “What is death and dying like for you?” We have done that with the Pakistani women’s group in particular. We have recently moved on to go, “What stuff do you want to know about?” We had a series of four workshops where they could choose anything, so they talked about stuff such as religion and what services are available—none of them knew what services we had, which is shocking. But the workshop that they all voted for the most—and it was packed—was on benefits. These women are structurally so disadvantaged; they were asking about pensions and so we had benefits advisers come in. The women asked, “Please could we set this up monthly, for you to come speak to us and inform us?”, but it was a “No, we don’t have capacity.”

I have been asking for these workshops to be scaled up across Bradford. What do I get told? That it is not the hospices’ role, not the hospital’s, not the integrated care board’s. I have gone and presented my data and the feasibility with “This is how we can do it, this works really well”, but everyone says it is not their job. That is why I think the public health approach going into communities requires a completely different approach—it needs people who are seen as trustworthy and it requires us to be trustworthy, that is, we go in there, genuinely listen, and do stuff about the stuff talked about. I have done it and that is where the trust comes from.

It requires core funding, and the hospices cannot stretch to that—that is a huge issue. I have done it with a few groups, and to do that at scale in a place like Bradford—it absolutely has all the assets to do this—the funding has to happen. That is absolutely needed. We need to have that reciprocity, genuinely going in there and saying, “We’re here to hear, and we will act on that.”

Sam Royston: I agree with everything Jamilla says, as always. There are two connected issues here. One is about better whole-community conversations about death and dying, and death cafés are a fantastic example of that. I also think, incidentally, we need much better conversations about death, dying and bereavement in schools. We have worked recently with a number of other charities on getting bereavement education on the national curriculum, which I think would be a fantastic step forward. We need better whole-society conversations about death, dying and bereavement.

However, there is another conversation, which is about practical discussions about people’s preferences at the end of life—advance care planning conversations. We need to get much better at them—better at them happening and particularly better at them being acted on. We did a survey recently on why people do not have those conversations about their cares and wishes for their end-of-life preferences, and the key reason people said they did not have them was because they felt they would not be acted on. So we need to make sure that we are thinking about—and this includes ensuring access to palliative care support—how to enable those conversations, when they happen, to be acted on.

We also, incidentally—this is a bit of a technical point—need to make sure that those preferences are shared across services. There is very poor data sharing at the moment; ambulance services and the hospice needs to have that, and the GP and hospital need to know what people’s preferences are. We need to make sure that everyone involved in the care of that person is able to respond to those preferences.

[Naz Shah]

Q Thank you to all of you and for what you do. I will direct my question to Dr Jamilla—it is so lovely to hear so much about Bradford. I want to talk about what Dr Rachel Clarke said yesterday. She said that when patients had begged her to end their life, it was not because of the cancer but because they had not received proper palliative care. From your research and experience, would you say that ethnic minorities or those from socioeconomically deprived backgrounds do not always receive good palliative care? What are the dangers in this Bill for you?

Dr Hussain: The data is quite clear: ethnic minority groups do not have good access to palliative care services. We have been talking today about increasing the access to palliative care, but we need culturally competent and safe palliative care to meet the needs of those people, particularly those who are most disadvantaged. We do not just need to increase the offer; it also has to meet the needs of those who are most structurally disadvantaged. In Bradford, I have spent three years trying to collect all the data so that I can understand the inequalities. But in our specialist palliative care team we reduce the inequalities for ethnic minorities, because we see them in A&E and the hospital, and we go to where they are at. The risk for somewhere like Bradford, where we are doing okay—we have a long way to go—is that the Bill creates a fear in those communities. I have been going out and trying to build trust—being trustworthy—and they made it really clear to me by saying, “We trust you; we don’t trust the system. So if I came into hospital, even if your team was there, I would be really scared to access palliative care.” In a system that is doing okay, we are now adding this new risk. We need to mitigate against that.

The public health approach is really important, as is going into those communities. But we got a lot wrong for those communities post-covid, and the reason we got a lot wrong was that we did not have representation from those groups at the decision-making table at the most senior level. The people who were represented were consulted. We need that representation. I think we can do this, but the change we need is that at the most senior level we need representation from those communities. They need to have the power to make decisions. It is those people, who are going to be most harmed by this, who should be deciding what “safe” is. They should be the ones who decide if we have reached that safety level, otherwise we are going to see the same things that we saw in covid.

[Naz Shah]

Q Building on that, Chris Whitty and the British Medical Association said, from an ethnic minorities and reflection point of view, that the Mental Capacity Act 2005 and safeguarding training are fit for purpose. We know that we do not have a workforce that is reflective of the communities it serves and that we do not have representation at high levels, so in your clinical experience, for disadvantaged groups, do you think the training on capacity and coercion is fit for purpose?

[The Chair]

Order. I am sorry to do this but we have eight minutes left, and Members have three questions. This is the fourth question, so I ask those who answer to be as concise as they can, otherwise we will not get through the questions.

Dr Hussain: I think I have touched on that before. From my experience, there are discrepancies—it is not like six doctors always come out with the same answer. I have the utmost respect for Professor Chris Whitty; I know that we was not saying that this is the case across the board. We see those discrepancies, and with those vulnerable groups—ethnic minorities and those from poor or disadvantaged backgrounds—we have to spend even more time to get to understand it. So there are even more discrepancies for those groups. Ultimately, I do not think the Mental Capacity Act and safeguarding training are fit for purpose. For something like assisted dying, we need a higher bar—we need to reduce the variability in practice. I think that is a real challenge, but it is doable if we can get everyone on the same page.