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

Debate between Naz Shah and Sarah Olney

Committee stage
Tuesday 25th March 2025 Public Bill Committees

[Sarah Olney]

I will conclude my remarks by observing that the only reason that we are looking at contracting out assisted dying services to a private provider is that the country is simply not ready for assisted dying. We know how overstretched and under-resourced our NHS is, and we are looking at cutting corners in the Bill, in our policymaking, in our scrutiny of this legislation, and in how this legislation and the service is delivered.

[Naz Shah (Bradford West) (Lab)]

It is interesting to follow the hon. Member for Richmond Park, because I rise to speak to amendment 537, tabled by my hon. Friend the Member for Shipley. The amendment goes further than the hon. Member for Richmond Park would as far as local authorities are concerned.

The amendment also concerns both the national health service and the provision of healthcare by charities. My hon. Friend the Member for Shipley knows both fields extremely well. She was the director of quality and strategy and chief analyst at the Department of Health, and then had a senior role at the Centre for Ageing Better. Her amendment would mean that assisted dying services could be provided only by charitable organisations and not by the national health service.

I strongly support the general principle that if we do have assisted dying, it should be free at the point of use. If this House decides that people do indeed have the right to an assisted death under the conditions that this Bill sets out, then it should not be something limited to those who can afford private healthcare. There are, however, strong objections among general practitioners to providing assisted dying as part of their services, and I do not think we should plan to have private firms work under contract from the NHS to provide assisted dying either.

The Royal College of General Practitioners said in its written evidence that

“any assisted dying service should be seen as a standalone specialised service that healthcare professionals may opt to provide with additional training and should not be deemed core GP work.”

The royal college’s advice, which is founded on the views of its members, means that we should give very strong consideration to putting assisted dying outside the normal workings of the NHS. If we do that, it seems that there are a few options. One is for the Secretary of State to invite private firms to tender for contracts and administer assisted dying services. As I have said, there are very strong reasons why we should not plan to have private firms work under contract to the NHS to provide assisted dying; for me, that it is one of the worst possible options.

Another option is for the NHS to fund a specialised assisted dying service that would be separate from its other functions. That could potentially be feasible, but it could also represent a significant cost for the NHS, because we still have not had the impact assessment from the Government and we have no idea how significant that cost may be.

There is also the worry that if assisted dying becomes available on the NHS, some people will become too frightened to access palliative care, as was outlined to the Committee by Dr Jamilla Hussain. I will read a brief part of her written evidence to the Committee. After talking to the patients in ethnic minority and other disadvantaged groups, she said:

“Overwhelmingly, racialised communities expressed deep concerns that they would be more likely to be pushed towards AD through systemic biases and societal attitudes about whose lives are valued… While safeguards were acknowledged, many remained sceptical that they would be applied fairly and equitably, fearing that vulnerable individuals, particularly those who lack strong advocates or English proficiency, might be at greater risk of being guided towards AD rather than offered appropriate care options.”

I want to share something with the Committee. We often get taxis to and from work and home; I got into a cab yesterday, and the chap who was driving was called Dave. His 84-year-old aunt died on Friday. When we were discussing this option, he told me really clearly that she has opted for a cremation, which would cost less money, just because she internalised that idea of burden and she did not want a cost for those that she left behind. She had not seen a doctor for 40 years. That brought home the idea of internalised coercion, internalised pressure and mistrust, because he also talked about what happened during covid. We had an interesting conversation. I told him that it was interesting that he had said that, and today I am talking about it. That is the reality: it is about how people perceive healthcare provision, the potential inequalities, and what the barriers are to access—all the preconceived ideas that we have about the provision of healthcare.

That brings me to a potential third way, which is what amendment 537 is about: charities. Charities are one way of addressing the concerns I and the hon. Member for Richmond Park have outlined about the risk with private companies and the risk of loss of confidence and access to the NHS, as well as the concerns outlined by the Royal College of General Practitioners. They could well be mitigated by ensuring that the lead responsibility for administering assisted dying is given to charities rather than the NHS.

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

Debate between Naz Shah and Sarah Olney

Committee stage
Tuesday 25th February 2025 Public Bill Committees

[Naz Shah]

I accept that the majority of those 60 cases are in such jurisdictions, but to me it does not matter whether it is the majority or one—one death is too many, as I am sure my hon. Friend will agree. In Oregon, the evidence was that it was two, but it is also important to reflect on the fact that Oregon does not record these things. There is no record of the people who had anorexia—by and large, it is women—and who felt that they fit the criteria for assisted death, or that they were on a trajectory to fit it, because they had decided not to eat. So we cannot exactly rely on the two cases that have been found—and those were found only because of the research that was carried out. That does not quite satisfy the question.

[Sarah Olney (Richmond Park) (LD)]

Does the hon. Lady agree that it really does not matter what happens in other jurisdictions? The question is, does this legislation prevent people who are currently suffering from anorexia from seeking an assisted death or not?

[Naz Shah]

I completely agree with the hon. Member.

Coming back to the physicians who justified eligibility by citing the physical complications of anorexia, not just the mental disorder itself, we know that in all 60 of the cases that have been cited, the person did not have a terminal illness other than the one that was caused by anorexia, because that then fit the definition. Under the Bill, the same could happen here. I say in response to the hon. Member for Richmond Park that eating disorders or substance use disorders could still qualify if a doctor determines that the resulting physical deterioration meets the criteria for terminal illness. I will speak to anorexia in much more detail when we debate a further amendment that I have tabled.

Amendment 181 would also remove references to the Equality Act and the Mental Health Act, and the Bill would not define disability or mental disorder. That raises serious concerns, so I will not support the amendment. I encourage Committee members to strengthen the Bill in this regard and not weaken it. The Acts define mental illness and disability as taking a clear medical model, and again it is not clear whether my hon. Friend the Member for Spen Valley is further suggesting that a new definition should be used—but I am going over ground that I have already been over.

--- Later in debate ---

[Naz Shah]

I thank the right hon. Member for his intervention. I have talked about that case, and the court concluded:

“The prospects of her recovery overall approach zero… Given that it is extremely unlikely that Ms L will recover from her anorexia it is…in her best interests to”

move to palliative care, as it was considered a terminal illness. In some ways, that makes my point for me: she was diagnosed as terminally ill. The purpose of the amendment is to close that loophole. The majority of these cases are young girls and young women. I do not want them to get to a stage where they qualify under the Bill because they have a terminal illness due to refusing food, because that can be treated. That is the point that I am trying to make.

Let us say that only one or two people with anorexia have an assisted death if the Bill becomes law without my amendment. I hope that every member of the Committee would agree that even one such death would be unacceptable. Some might say, “Oh, but we must not make the perfect the enemy of the good.” That has been said in the debate, or sentiments have been expressed that reflect that sentence.

That is a good argument to make when we are trying to persuade our teenagers to finish their homework for school and so on. It does not wash for me when we are trying to create a Bill with the strongest possible safeguards for vulnerable adults, and it is too close to the arguments made in favour of brutal actions across the globe. We say things like, “To make an omelette, you’ve got to crack a few eggs.” If we want to make the Bill the best it can be, we cannot use such arguments. Perfection is not the enemy of the good—perfection is absolutely what we should be pursuing in this Committee.

Reference was made to one of the witnesses who gave oral evidence. I remember being aghast at the idea that these two people who died in Oregon were somehow a red herring and that there had been only two. It was really disappointing, and I was extremely angry at that comment. That is not something we should be doing or the standard we should be setting. We cannot be saying that.

There is nothing good about letting people who have sadly reached an advanced state of malnutrition be given assisted dying. Surely we can agree on that. If this Bill does not include my safeguard, it will do two things. First, it will increase the dangers of anorexia. People already develop anorexia to such a degree that they perish of malnutrition. Allowing such people to apply for assisted dying will mean that more severe anorexics die. If we do not adopt my safeguard, we run the further risk that those who are not anorexic, but wish to hasten death, stop eating in order to qualify for an assisted death. Both of those would be truly malign. I would hope all Members of the Committee will accept my amendment to protect those who would otherwise be at risk of starving themselves to an assisted death.

I also want to bring to the Committee’s attention a public letter that has been released this afternoon by nearly 40 individuals who work in the field of eating disorders. They have said, on the amendment to which I am speaking:

“This amendment states that mental illness alone does not qualify as a terminal illness, but as the legal text (“Nothing in this subsection…”) makes clear it has no effect beyond restating that the condition must meet the requirements of clause 2(1). If a doctor holds that a mental illness meets the test in clause 2(1) for terminal illness, this amendment will do nothing to prevent that.”

They further say:

“Eating disorders are treatable. They are life-threatening when left untreated or poorly treated, but this risk is preventable, and deaths from eating disorders are not inevitable. As campaigners, clinicians, charities, and organisations working with those affected, we urge the committee to take these concerns seriously and ensure this bill does not put people with eating disorders at risk of premature death under the guise of assisted dying.”

On my amendment 402, they say:

“Amendment 402: Explicitly states that a person cannot be deemed terminally ill because they have stopped eating or drinking.”

On amendment 48, they say:

“Amendment 48: Clarifies that a person is only considered terminally ill if their death is reasonably certain within six months, even with all recommended treatment.”

They are supporting those amendments, 9, 10, 48, 402 and 11. On that note, I will finish.

[Sarah Olney]

I rise briefly to speak against amendment 234 in the name of my good and hon. Friend the Member for Harrogate and Knaresborough. I will keep it brief as I know he is not going to press to a vote.

First, the Bill that was voted on on Second Reading was a Bill for terminally ill adults in the last six months of their lives. I do not believe attempting to amend the scope of the Bill in Committee is what the House has asked us to do. I think the House voted for a Bill that was specifically for people within the last six months of their lives and that to be amending it—although I accept he is not putting it to a vote—is not in order.

Secondly, I want to reflect on Professor Sir Chris Whitty’s oral evidence to the Committee about how difficult it is to determine when somebody is within six months of the end of their life and how much more difficult it would be to determine whether someone is within the last 12 months of their life, notwithstanding that we are talking about a very specific category of people. For me, that really does give rise to the fear that we would not be able to make a specific determination on whether somebody was in the last 12 months of their life. There would be a risk that people actually have many years left to live. In the case of motor neurone disease, for example, we have seen prognoses of between two and five years, so we risk shortening people’s lives unduly. Furthermore, people might not want to make the prognosis, and therefore people who would like to have the right to end their life in their final 12 months because they have a neurodegenerative disorder might be denied that right, because it is impossible to come to such a determination.

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

Debate between Naz Shah and Sarah Olney

Committee stage
Tuesday 25th February 2025 Public Bill Committees

[Naz Shah]

My hon. Friend comes from a mental health background, and I appreciate his expertise. We have talked a great deal about coercion—we have debated it for hours and hours—and I agree palliative care specialists, who deal with such issues as their day job, can provide that intervention and support the patient by establishing a much stronger relationship with them. I added my name to this amendment because I feel very strongly that palliative care must be a central part of the Bill if it is to provide patients a real choice at end of life. There should not be an assumption, as there is in the Bill as drafted, that assisted death is the predominant option once a person embarks on this pathway.

Let me return to the matter of minoritised voices. Dr Jamilla submitted written evidence, and spoke passionately, about the options available to people from black and minority ethnic communities. She said that they feel very much ignored. As I have said previously, palliative care is not fit for purpose because there is postcode lottery: provision depends on where a person lives, whether they have a hospice nearby, what the hospital options are and so on. There is a fear among ethnic minority communities of being pushed towards assisted death.

[Sarah Olney (Richmond Park) (LD)]

Does the hon. Lady agree that the purpose of this amendment is to ensure the Bill delivers for the people for whom it is intended, such as the person the hon. Member for Spen Valley spoke about? It would put in place protections for the people for whom there is a choice, and that where those choices exits, they are laid out in full and properly examined before a final decision is made.

[Naz Shah]

I completely agree. It is imperative that those options—pain options and care options, including with the family—are explored in detail. The last time that I spent time in a hospice was when my brother-in-law was dying of cancer, and I remember that, as a family, we were very much involved in those conversations. Having such expertise empowers not just the patient but the family. Losing somebody who has a life-threatening condition is a difficult time for families and loved ones. When the wraparound model of palliative care, with specialist nurses and doctors, is good, it can be amazing. I have heard plenty of stories about when it is good. Last week, I mentioned a friend of mine who lost her husband last year, and she said that the palliative care nurses and doctors could not do enough. That gives the family confidence to explore the options. In that instance, that person would have benefited from this Bill—she encouraged me to support it.

As Dr Jamilla said, some people would absolutely benefit from the Bill, and they cannot be dismissed, but how do we legislate to cover people who do not have equal access to palliative care or to healthcare? There is discrimination. The covid experience that we went through recently showed the impact of inequalities. Disabled people, people with mental health conditions, elderly people, and people from black and minority ethnic communities, say that they were DNR-ed—subject to “do not resuscitate” orders. There is already a lack of trust in services, so we need to strengthen palliative care.

There is a fear among these communities that they will be pushed towards assisted dying. A consultation with participants from Pakistani, Roma, Nigerian, black Caribbean and Indian backgrounds revealed overwhelming mistrust, which is deeply rooted in the experience of discrimination and the disproportionate impact of covid-19. As one participant put it,

“They are doing this to save money…to kill us off.”

To get confidence among communities back, we need specialists people can rely on. That is what the amendment speaks to, and I hope that the Committee will support it.

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

Debate between Naz Shah and Sarah Olney

Committee stage
Wednesday 12th February 2025 Public Bill Committees

[Naz Shah]

I would like to hope that that would never happen; I have a huge love of the NHS and of the people I know in it who make decisions every day, particularly given all the cuts—even more so, post covid. But there is that risk; I would like to hope that it is very small.

When it comes to mental health, the debate is similar to the one about capacity: it is the same conversation about whether something is fit for purpose. Just because something already exists does not mean that it will necessarily suit what we are doing here.

On International Women’s Day, the Minister for Safeguarding and Violence against Women and Girls, my hon. Friend the Member for Birmingham Yardley (Jess Phillips), eloquently reads out a list of victims of domestic violence who have been murdered. There are two a week—I make no apologies for keeping coming back to this. Only yesterday, there was an article about women’s charities that support victims of domestic abuse citing their concerns. The amendment speaks to those concerns. How could it not be supportive?

I am not convinced by the idea that the amendment would introduce an element of jeopardy. People make decisions with their families every day. We sit and have conversations. I speak from a position of privilege—as we all do in this place, frankly. We speak from positions of privilege about how we could have these conversations with our families. But we know that inequalities exist and that some people do not have those privileges. We know that society is unequal. We know that domestic abuse, elder abuse and mental health issues exist.

In my constituency, it takes 14 months just to get a child and adolescent mental health services referral for a young person; I appreciate that we are not talking about young people. My point is that there is a real backlog in the NHS—in terms of waiting times and pain medication, for example. Palliative care is not equal, as I said yesterday. I am genuinely asking Committee members: which bit of the amendment can we not support?

[Sarah Olney]

The hon. Lady is making a powerful speech. She referred to an article she read yesterday about domestic violence in relation to the Bill; it may have been the article by Sarah Ditum in the New Statesman, which I also read yesterday. It cited two cases in which people had been on trial for murder and had pleaded mercy killing, or said that they had carried out the killing of their spouse or partner on the basis that that person was suffering greatly at the end of their life. In both cases, when the evidence was examined, the men were found guilty of murder, because it was very clear that that was what had actually happened.

The article had a profound impact on me, because it demonstrated the risk that we are running: that people will be able to use the Bill in instances of domestic violence. We have to take that very seriously and consider the implications.

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

Debate between Naz Shah and Sarah Olney

Committee stage
Tuesday 11th February 2025 Public Bill Committees

[Sarah Olney]

I heard Sir Chris Whitty in particular say that it would be preferable to have a more straightforward Bill that did not have too many bureaucratic hurdles for people to overcome. That was why he was keen for the Mental Capacity Act to be retained. However, I tabled the amendment precisely because, when people are thinking about whether assisted dying is an appropriate decision for them, I do not think that it is safe for them to be judged merely on the basis of their capacity. It is by no means my intention to increase bureaucracy; I am merely proposing that the Act is not sufficient in this case.

[Naz Shah]

Three psychiatrists gave evidence to the Committee in person: Professor Allan House, Dr Annabel Price, of the Royal College of Psychiatrists, and Professor Gareth Owen. All expressed doubts about the use of the Mental Capacity Act to assess whether a person was in a fit state of mind to undertake assisted dying. Does the hon. Lady agree that we should place great weight on the opinion of psychiatrists when assessing whether the Act should be used to assess applicants for assisted dying? It is a horse before the cart scenario, because the Act was not made for this context; when it was passed, we were not talking about the ability to choose to die.

[Sarah Olney]

I agree exactly with the hon. Lady’s point. The Act was not designed for this purpose, and it is essential that we carefully scrutinise whether it should be used in this way.