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

Debate between Sean Woodcock and Naz Shah
Naz Shah Portrait Naz Shah
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I have to respectfully disagree with the right hon. Member that this is a settled position. I also challenge, on the record, what the Minister said. I struggle to understand how the Minister and the Government can say that this is a settled position without having gone to consultation on the Bill and without having an impact assessment. That does not satisfy me. My role when I agreed to be on the Committee was to come in to scrutinise and help strengthen the legislation. In doing so, these are the things that I am pointing out, because the safeguards are not strong enough for me.

I come back to the Court of Appeal. This would be a medical intervention, albeit to end somebody’s life. It would be administering a lethal drug to end somebody’s life, and it would be done by medics. Medics are involved in every stage. If there is case law that has already established that doctors have to look at undue influence in medical decisions, then I say to every single person on the Committee: what are we resisting? When the Court of Appeal has already said so, why is the Committee debating keeping this language out because it makes things complicated?

Let us go back to the words of Dr Jamilla Hussain, who gave evidence to the Committee. She is a clinician, and she absolutely accepts that there are some people who would really benefit from this law. As a clinician, she wants to get there. Indeed, I spoke to Professor John Wright, and he said, “Naz, absolutely—this is where we need to be.”

Sean Woodcock Portrait Sean Woodcock
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My hon. Friend is making a very powerful argument. She is absolutely right to focus on protecting the vulnerable people who this law might apply to. She has touched on medics. I also want to mention the state and its role in what we are talking about. For example, I am opposed to capital punishment, and I link this discussion to that because we are talking about the state providing an individual with a method by which they can end their own life, such as by handing them a pill. I am concerned that, if we are not taking these safeguards seriously, we are abandoning vulnerable people by allowing the state to aid and abet the misuse of the Bill against them. Does my hon. Friend share my concerns?

Naz Shah Portrait Naz Shah
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I share my hon. Friend’s concerns about the Bill not being tightened and fit for purpose. We cannot afford for those people to slip through the net. One woman’s death is one too many. One older person’s death is one too many. That is the bar we have to set.

I come back to the words of Dr Jamilla: she said, “Yes, absolutely.” Every single Committee member, and anyone familiar with this debate, found it heartbreaking to listen to those who came in to give testimony about how members of their families died. Those stories will stay with us forever, and rightly so. That is why, in principle, I am supportive of where we need to get to with the Bill. However, as Dr Jamilla said, we cannot get there by ignoring this big lot of people with vulnerabilities and inequalities, who would absolutely need this legislation. We need to fix the inequalities first.

Let us be honest: as legislators, we know that we will not fix every ill in society, otherwise we would not need a police force. We would not need laws if everybody behaved as they should and supported each other. However, it is incumbent upon us, as legislators in this place, to try our best.

Nobody came to this Bill Committee thinking it was going to be a walk in the park. We certainly did not know that we were going to get evidence throughout it, and plenty of challenges are popping up. We came to this Committee—I came new to the subject—because it is of such importance. I sat in the Chamber for five hours on Second Reading, bobbing, but I did not get the chance to speak—and that happened to another 100 colleagues, who also did not get to speak. However, those who made contributions—whether they were for the Bill, concerned about the Bill or were clearly not going to support the Bill—did so because they feel very strongly about it. That is our responsibility.

I come back to amendment 23, which was tabled by the hon. Member for Reigate: we should really consider adding it to the Bill, because that would strengthen it. The amendment does not dilute the Bill, and it does not add another hurdle given that the Court of Appeal has already said that there is a responsibility to look for undue influence. I do not understand the resistance to the amendment, which I will support.

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

Debate between Sean Woodcock and Naz Shah
Naz Shah Portrait Naz Shah
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I completely agree.

Professor Owen also said:

“I have had over 20 years of research interest in mental capacity. When I look at the issues relating to mental capacity with the Bill…the other important point to understand is that they are very novel. We are in uncharted territory with respect to mental capacity, which is very much at the hub of the Bill.” ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 226, Q286.]

Like my hon. Friend the Member for Bexleyheath and Crayford, I am certainly not a doctor, although I have experience in the NHS, but I do know that we do not have psychiatric experts or experts on capacity in this Committee.

Sean Woodcock Portrait Sean Woodcock (Banbury) (Lab)
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Earlier, the hon. Member for Solihull West and Shirley made a point about public confidence in the Bill. In oral evidence, the representatives from the Royal College of Psychiatrists—we nearly did not hear from them; we had a vote about whether we would, and they were added later—made it clear that they have severe doubts about applying the Mental Capacity Act to the Bill. Does my hon. Friend share those concerns?

Naz Shah Portrait Naz Shah
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I absolutely share those concerns, which is why I pressed the issue to a vote. As I have explained to my hon. Friend the Member for Spen Valley, I am grateful that the Royal College of Psychiatrists gave evidence. It said that the Mental Capacity Act

“is not sufficient for the purposes of this Bill”.

In oral evidence, Professor Jamilla Hussain, an expert in palliative care and health inequalities, highlighted an inequity in assessment using the Mental Capacity Act. She said that she does not think that

“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.” ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 199, Q260.]

My hon. Friend the Member for Penistone and Stocksbridge mentioned the process in the Bill being repeated eight times, but I want to bring us back to the issue of capacity in relation to coercion. The Royal College of Psychiatrists said:

“In any assessment of capacity, we must also consider whether a person is making the request because they consider that they are a burden or because they do not consider that they have access to effective treatments or good-quality palliative care. At a population level, palliative care, social care and mental health service provision may impact the demand”

for an assisted dying service. Although I appreciate that we will debate this in greater detail later, on clauses relating to coercion, it relates to the issue of capacity. In her evidence to the Committee, Chelsea Roff, a specialist in eating disorders, said:

“One thing I would like to highlight in our study is that all 60 people who died”

by assisted dying after suffering from anorexia, who were mostly young women,

“were found to have mental capacity to make the decision to end their life, so I worry that mental capacity will not be an effective safeguard to prevent people with eating disorders from qualifying under the Bill.

I also note that Oregon and California, where I am from and where we have found cases, have an additional safeguard to mental capacity. That is, if there are any indications that the person might have a mental disorder, that person must be referred for a mental health assessment.” ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 141, Q177.]

--- Later in debate ---
Sean Woodcock Portrait Sean Woodcock
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My hon. Friend the Member for Stroud, in his rebuttal to my hon. Friend the Member for Bradford West, described assisted dying as “medical care”. Personally, I do not regard assisted dying as medical care. Does my hon. Friend agree?

Naz Shah Portrait Naz Shah
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I am still having that debate in my head, and I am not convinced. I will not digress—I will come to the point—but there is a conversation about whether it is “treatment”, “assisted suicide” or “assisted death”. Those terms have been bandied about. I genuinely think that, ultimately, we have to use the word “suicide” because we are amending the Suicide Act 1961. I appreciate the context in which the promoter of the Bill puts it forward, but the truth is that it is about taking one’s life, so that is how I respond to that question.

To come back to the amendments tabled by the hon. Member for East Wiltshire, the reason why I will support them is that I have way too much experience of people in vulnerable positions, and I have a lifetime of experience of seeing what happens. I do think there are options when somebody has a diagnosis of terminal illness. The prison systems are set up to be able to give them compassionate leave and to explore other avenues. Once they are outside that system, they can access support and have their vulnerability reduced.

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

Debate between Sean Woodcock and Naz Shah
Naz Shah Portrait Naz Shah
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Q Dr Ahmedzai, in the evidence you submitted, you said:

“I have studied the reports from, and spoken with medical and nursing clinicians from US and Australian jurisdictions and am satisfied that external coercion has never been reported or led to a prosecution.”

The state of Oregon carried out a survey of people who died under its assisted dying scheme in 2023. Its report stated that 43% of those who chose to die said they did so because they felt they were, and I quote directly from the term used in the survey, a

“Burden on family, friends/caregivers”.

Is that something you are prepared to see happen in the UK?

Dr Ahmedzai: It goes absolutely to the core of being British—we are always saying sorry, aren’t we? We apologise for everything. In everything we do, or everything we might do, we think we might be treading on toes and are always worried about being an imposition. All my professional life, I have come across patients and families in which there clearly is that feeling going on, usually with an older person or even a younger person who is drawing a lot on the emotional and physical resources of the family. It is natural that we feel a burden; it is impossible to take that out of human nature.

The issue is, does feeling that one is, or might become, a burden something that could influence a decision as major as looking for assisted dying? In that respect, I look to all those jurisdictions that have been offering assisted dying in different ways, and I have never seen a single case ever taken to the police or prosecuted. Evidence I have heard from other jurisdictions shows that, yes, it is possible—we all go through life feeling that we are a burden on someone—but it does not influence people in this particular decision. If anything, I am told that, in other jurisdictions, families are saying, “No, don’t do it.” They are exerting negative coercion—“don’t do it” coercion—but people are saying, “No. It’s my life. I’ve made my mind up.” They have mental capacity, and we respect that.

Sean Woodcock Portrait Sean Woodcock (Banbury) (Lab)
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Q Coercion is one of the main issues that people who are concerned about the Bill raise in opposition to it. That would include myself. We had many distinguished witnesses this morning, and the view was that coercion is “rare” in healthcare generally. It was almost given across that we did not need to worry about it, because staff are so well trained in safeguarding and so on, and they have such a level of experience. What are the views of the panel on that? Is coercion something that we should really not be so concerned about?

Dr Clarke: Based on my clinical experience, I would push back on that in the strongest terms. I am the kind of doctor who believes there is nothing to be gained from sugar coating reality. We have to be absolutely honest with patients and the public about shortcomings, failings and areas where my profession and the rest of the NHS are getting things wrong.

It is my clinical experience that not only are the majority of doctors not necessarily trained in spotting coercion explicitly, but they are often not trained explicitly in having so-called advance care planning conversations with patients around the topic of death and dying, and how a patient would like the end of their life to proceed. It is almost impossible for me to overstate how much avoidable suffering occurs right now in the NHS not because of a lack of resources for palliative care—although that is an enormous problem—but because of a lack of confidence, skill and expertise among the medical profession writ large with these very difficult conversations.

We are all familiar with the idea of death and dying being a taboo in society. People are scared of it, and they hesitate to bring it up with their friends and family. In my experience, many medical students and doctors also suffer from that anxiety. They are scared, and they find it a taboo subject. What that means is that sometimes coercion occurs because the doctor—the consultant responsible for this person’s care—will not even bring up the fact that they think the patient is dying, because it is an uncomfortable conversation. Conversely, I have worked with senior hospital consultants in the NHS who have deliberately prevented our team from accessing their patients, because they believe that the hospital palliative care team wants to kill the patients, and that if I go and see the patient, I will give them a lethal dose of drugs.

These are the kinds of extraordinary misunderstandings and failures to prioritise patient autonomy that are happening now. That is even before we get started on conversations around whether someone would like to consider assisted dying, so it is a huge problem.

--- Later in debate ---
Naz Shah Portrait Naz Shah
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Q But there are cases where insurance companies would stop paying for the treatment of the individual. Am I right?

Dr Spielvogel: No, I actually do not think that you are right. When we are talking about lifesaving interventions such as chemotherapy or dialysis, that is not correct. They are bound by law to cover all things that are medically necessary. They do not say, “You have gotten six months of chemo. We are not paying for any more.” That is not how it works.

Sean Woodcock Portrait Sean Woodcock
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Q It seems clear from what you are saying that in your view, coercion is rare, or at least it is rare in comparison to familial pressure not to go ahead with assisted dying. It does sound, though, like you are saying that it is more common for people to say that they feel as though they are a burden towards the end. I think Dr Kaan said it was common, or certainly less rare than coercion to go ahead with assisted dying.

We heard from experts earlier about the paucity and lack of provision of care across the country. Certain people can get access to very good care, but too many people struggle to, particularly people of certain ethnic backgrounds, people on low income, and so on. Please correct me if I have misinterpreted your views, but from what you have said so far, it sounds as if you think that exercising the right to assisted dying because there is a paucity of appropriate care in your locality, or because you cannot afford it, is a perfectly legitimate exercise of autonomy, based on the society around you. Would that be a fair assumption of your views?

Dr Kaan: I think that is not an entirely fair representation of what I am saying. Yes, we do need respect for people’s autonomy and the reasons they may come to this choice, but I also think that from what I have heard this morning, it sounds like there is a conception that people choose assisted dying and then they do it. What I see, by and large, is that people want to have this as an option. It is an option among the other options of hospice palliative care or palliative treatments. The availability of this as an option often brings people tremendous relief from their suffering—just from the anxiety over how they might die, or what suffering might be in store.

I had a case of a woman with ALS, or amyotrophic lateral sclerosis. She was very afraid of how she might die with that condition, and she felt like she might suffocate to death. She was so focused on having the option of aid in dying because she was terrified of what might be in store for her. We were able to incorporate her into a hospice that offered comprehensive end-of-life care, including the option of aid in dying. We got her through the process, we had the medications available and she told me how much relief she felt from having it as an option, but ultimately she decided not to use it. She decided that she was getting really good care from her palliative care and hospice teams, and that her symptoms were well controlled. Although she was extremely grateful that she knew the medications were available should she decide to use them, she did not end up needing to use them or wanting to use them.

That is the reality of what is happening in a lot of cases where this is an option among other options. The availability of this option is, in and of itself, a palliative care treatment for many people. On whether or not wanting to avoid being “a burden” to a family member or to a caregiving team is a valid reason to pursue this, yes, I think that is a valid reason among many for people who have a value system that highly orders that.

Dr Spielvogel: I just wanted to add something, if I may. I have heard this argument—or rather, this concern—a few different times, and it strikes me as what is called a false dilemma logical fallacy: that there is either/or, when in reality there are many alternatives that people can choose from. Saying “If we don’t have all of these types of care, we shouldn’t offer this option” is like a hospital that does not have sufficient amounts of IV pain medications saying to a labouring woman, “Well, we don’t have enough IV pain medications, so we are not going to offer you a labour epidural, because that is a false choice.” That does not actually make sense.

Look at it from a patient’s perspective. Think about a patient who is dying from terminal cancer, is in lots and lots of pain and does not have any good options for their pain control. Imagine saying to that person, “We don’t have all of this care or this option over here available to you, so we are not going to allow you to have an assisted death”, even if they are telling you, “This is what I want. Why won’t you give this to me?”. It does not make sense to remove this as an option just because all of the options might not be available to everyone all of the time. It is a bit cruel when you think about it from a patient’s perspective.

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

Debate between Sean Woodcock and Naz Shah
Naz Shah Portrait Naz Shah (Bradford West) (Lab)
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Just following on from the speech of the right hon. Member for North West Hampshire, I would not read the situation as a misunderstanding by the hon. Member for East Wiltshire. I read the motion to sit in private not as an informal discussion, but as a very formal discussion. I am grateful to the lead Member for the Bill, my hon. Friend the Member for Spen Valley, who before this meeting explained to me what has now been explained here—about the issue of people’s availability, privacy and so on. But I do not suspect that we will be going into those details. If people are not available, we do not have to discuss why they are not. We do not have to discuss their personal lives. I am not sure that that is a good enough reason not to have a discussion in public. I trust colleagues across the Committee to be collegiate enough and big enough to refer to witnesses with respect. I think that is a given, considering the way in which we have conducted the Bill so far. I therefore do not support the motion to sit private.