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

Debate between Neil Shastri-Hurst and Naz Shah

Committee stage
Tuesday 25th February 2025 Public Bill Committees

[Naz Shah]

Professor Sleeman’s evidence to me around palliative care says:

“‘Essential’ services are not provided: A good example is that our study of community services that are provided to people with advanced illness found that just 1 in 3 areas consistently provides a 24/7 palliative care telephone advice line—even though this has been a NICE recommendation since 2011…Another example is that the most recent NACEL audit (National audit) found just 60% of hospitals provide a 7 day face to face palliative care service— even though this is also a NICE recommendation, and was a recommendation in the One Chance to Get it Right report (that came out of the Neuberger review—around 2015.)”

I appreciate the hon. Gentleman’s important point, but does he agree that not every GP is able to keep abreast of all the palliative care advances being made, which palliative care consultants would know about?

[Dr Shastri-Hurst]

I am grateful for the hon. Member’s intervention, which leads on to the point I was going to make. We are getting bogged down in nomenclature about what speciality is involved when this is actually about training. It is about whether the individual having the conversation has the requisite skills to have a meaningful conversation. Clauses 5(3)(a) and 8(6)(a) stipulate that the co-ordinating doctor or independent doctor

“has such training, qualifications and experience as the Secretary of State may specify by regulations”.

That is the key part. This is about ensuring that people having incredibly sensitive, challenging and difficult conversations with patients about choices available to them at the end of life have the requisite skills and knowledge to do so. That may not be applicable to each and every general practitioner, but those having those conversations should have that knowledge.

[Dr Shastri-Hurst]

I fear that my hon. Friend may be oversimplifying what I was saying. Perhaps I was not clear enough, so I will elucidate. I was certainly not suggesting that the required skills were merely those of being able to have a consultation and a conversation. I was talking about having the skills to have the information that needs to be imparted and the knowledge that underpins that and being able to articulate that within a consultation. It is a much wider picture than just having the communication skills—it is having the knowledge that underpins that. I am saying that that is not necessarily the domain only of someone who works in palliative care. There are a number of specialists who work within this field—it is a multidisciplinary field—and they all bring their expertise. The issue is about ensuring that anybody having these conversations has the knowledge base to conduct them properly.

[Naz Shah]

Will the hon. Member give way?

[Dr Shastri-Hurst]

I will try to make some progress. I want to move on to the other point I want to address, which is around bogging down the whole process with layer upon layer of bureaucracy. We are talking about a relatively small group of patients who are in the last six months of life and are then battling against the system that is meant to be helping them. If we put in layer upon layer and hurdle upon hurdle, it will become a much more difficult system for people to navigate. That does not mean that it would be a less robust system, but it would be a more difficult system. We are trying to make life easier, not harder, for those patients. This comes back to the central point that Professor Whitty made in his evidence about overcomplicating Bills: we overcomplicate Bills out of good intentions, but rarely make the safeguards more robust—in truth, we make them less safe.

--- Later in debate ---

[Naz Shah]

rose—

[Dr Shastri-Hurst]

I will give way because the hon. Lady has been very patient.

[Naz Shah]

I am grateful to the hon. Gentleman, who is being generous with his time. I want to bring in something that is very real for me at the moment. As a result of a hit and run, I have nerve pain for which I receive steroid treatment. I had treatment a couple of weeks ago and suffer from pain at the moment. My doctor is not a specialist in nerve pain; he has to refer me to a musculoskeletal service and I have been waiting for over a year for surgery.

I mention that because we already have care pathways for specialisms such as nerve pain. My hon. Friend the Member for Spen Valley referred earlier to somebody who had cancer and it was a horrible experience. I would like to have thought that in that instance they would have been offered tube feeding. However, to go back to the point, the GP does not necessarily have the skillset. My GP, and there are lots of them in that practice—it is a brilliant practice at Kensington Street—has to refer me on. That is the point of the Bill. The amendment speaks to developing an established care pathway. If we are to pass this legislation into law, we must ensure that there is a care pathway to explore palliative care.

At the moment clause 4(4), which my hon. Friend the Member for Stroud referred to earlier, says this has to be explored in the wider term. However, what that looks like is not a specialty. For some people with cancer and palliative care needs and six months to live, their trajectories could be—

[Naz Shah]

Sorry, Mr Efford. How can a GP guarantee that all those options have been covered, even in that initial discussion?

[Dr Shastri-Hurst]

I am grateful to the hon. Lady for her intervention. She makes a number of points. First, may I say that I am sorry about her own health issues? I think she hit the nail on the head when she said that the GP may not be able to offer that service. For instance, take shoulder injections. Some GPs can do a shoulder injection with steroids; some will refer to the hospital for it. My father was a GP who could do them, but others would have referred to me when I was an orthopaedic surgeon and I would have done them in clinic.

This will not be right for every single general practitioner; the issue is about having a cohort of general practitioners who have the skill and ability, and about having a flexible system that works for patients. It all circles back to the training point. The individuals who do this have to have the requisite skills. That, of course, will be set down in regulation.

The other point that the hon. Member for Bradford West made is that clause 4(4)(c) says that any clinician having that discussion must be able to explain

“any available palliative, hospice or other care.”

It therefore follows that if the clinician is unable to do that because of a lack of skill or knowledge, they should refer on to somebody who can do it. That is the fundamental principle of having informed consent and discussion with patients. If a clinician cannot provide that information, they ask for somebody who can. That was not uncommon in my practice: if I had something that was outside of my area of knowledge or specialist interest, I would refer it to a colleague. That is how those conversations take place.

The Bill as it stands allows that flexibility for patients without confining them. But it gives them the very welcome option of a palliative care referral; that is entirely open to them—it is not closed off from them. Of course, they will be fed into the palliative care route anyway, following the trigger of their terminal diagnosis. They will be going on the journey, and having further conversations around their end of life care. Those are the points that I wish to make.

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

Debate between Neil Shastri-Hurst and Naz Shah

Committee stage
Tuesday 11th February 2025 Public Bill Committees

[Dr Shastri-Hurst]

The hon. Member makes a reasonable point. I agree with her on many issues, but on this issue I have some reservations. Clause 18(4) says:

“The coordinating doctor must be satisfied, at the time the approved substance is provided, that the person to whom it is provided…has capacity…has a clear, settled and informed wish to end their own life”.

Of course, under the wording of section 26(1) of the Mental Capacity Act, that decision can be made at an earlier time and deemed to have currency, once capacity has been lost, for its enactment at a later date. I think that there could be a minor tightening of the wording or reassurances from Government to address that, but it is an important point to raise and air.

[Naz Shah]

rose—

[Naz Shah]

I am just trying to understand what the hon. Member is communicating. Under the Bill, if somebody has anorexia, diabetes or kidney failure and has the capacity to make that decision because they meet the criteria for the capacity to refuse treatment, will that mean that they can decide to sign up to this option?

[Dr Shastri-Hurst]

The Bill is very clear in determining that it is for those who have a progressive illness, disease or medical condition that cannot be reversed by treatment. On my reading of the Bill, it excludes that category of individuals who choose not to engage with treatment that in ordinary circumstances would prevent the progression or deterioration of their condition. I therefore do not see it as analogous with the hon. Member’s scenario of someone who could have a long life expectancy if they had taken their treatment, but who chooses not to. That is not captured within the Bill, in my interpretation.

[Naz Shah]

I am struggling with this, because it is clear from the evidence from our witnesses that that is the case where somebody has anorexia, for example, and they make that choice. As has been referred to plenty of times in the context of the Bill, the Mental Capacity Act has been used, and is sufficiently used, for people to withdraw treatment. Personally, I think that that is a pretty false equivalence, because when a person’s life support machine is turned off, the decision is made not by the person receiving lifesaving treatment, but by their loved ones.

According to what we have heard this morning, if someone has the mental capacity to use the MCA to withdraw treatment for a condition, that will lead to a diagnosis of terminal illness. It could kill someone. If I refused to take insulin, and I was diabetic, I would have the mental capacity to say, “Actually, I’m not going to take this treatment, so can I make a decision?” I am just trying to check the hon. Gentleman’s understanding.

[Dr Shastri-Hurst]

With the greatest respect to the hon. Member, I think that she is conflating two issues. Someone can stop treatment under the MCA; over time, that will lead progressively to death, with some conditions—she gave the example of being a diabetic without insulin—but that would not be a terminal illness in reference to this Bill. The Bill is very clear that it is about an inevitable and progressive illness, disease, or medical condition that cannot be reversed by treatment. Diabetes, treated with insulin, is not a progressive condition that becomes a terminal diagnosis; it is terminal only by virtue of somebody refusing treatment, which therefore would not be captured within the Bill.

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

Debate between Neil Shastri-Hurst and Naz Shah

Tuesday 11th February 2025 Public Bill Committees

[Naz Shah]

I think that the hon. Member’s intervention responds to some of the points of the right hon. Member for North West Hampshire.

We have heard a lot about the equivalence of endings versus decisions. The example given earlier, of somebody pulling the plug because they did not want treatment any more, happens in very few cases. From my experience of working in the NHS and with disabled people, when people are at the end of life, their cases sometimes do end up in court in front of a judge. That may be because there is a difference of opinion—be it medical, between the family, to do with capacity, or whatever the issue is. We are removing that. My understanding is that the promoter of the Bill is removing the need for the judge and is proposing a panel, which is what I read in The Guardian earlier.

[Dr Neil Shastri-Hurst (Solihull West and Shirley) (Con)]

I wonder whether the hon. Lady can help me with an area of her argument that I am conflicted by. I have heard the points made by my hon. Friend the Member for East Wiltshire, drawing the distinction between those who refuse treatment for a condition that is then terminal and those actively seeking assistance in ending their life. There is a third group who choose to refuse food and nutrition. That is not a treatment in the conventional sense, to combat a disease process, that is normal sustenance that would keep someone alive. Given that the MCA applies to that decision and someone’s ability to refuse on that basis, how does that interplay with the amendment as proposed?

[Naz Shah]

I have tabled an amendment to a later clause that talks specifically to that. The word “only” needs to be removed. We have seen this in Oregon, which I will come to later. We heard in the oral evidence that 60 women assessed to have capacity died because they had anorexia.

--- Later in debate ---

[Naz Shah]

My understanding, which comes from Chelsea Roff, was that that happened specifically in places such as Oregon and California, but I am happy to revisit that. Coming back to the point, we must ensure that people with an eating disorder such as anorexia or a mental health condition will be excluded from the Bill. That will be my second amendment. I do not know if that answers the question.

[Dr Shastri-Hurst]

It may well have been the way that I phrased it, but the point I was seeking to make was that the Mental Capacity Act, as it currently operates, can be used for those patients who choose to refuse food and water. My view would be that that is a distinct group of people who are refusing active treatment. Given the hon. Lady’s distinction between those who refuse treatment in the conventional sense and those who are seeking assisted dying and her view that for the latter group the MCA is not the appropriate mechanism, is she saying that for that group of individuals who refuse food and water—effectively choosing to end their life through starvation—the MCA is not an appropriate mechanism to assess their capacity?

[Naz Shah]

I thank the hon. Member for his intervention, but we are not here legislating on anorexia; we are here legislating on the option of assisted death. I am trying to understand where he is going with that argument. It genuinely does not make sense to me.

--- Later in debate ---

[Naz Shah]

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.

[Dr Shastri-Hurst]

Will the hon. Lady help me to understand her position? Is it a fundamental disagreement with any prisoner having access to assisted dying, or is it a fundamental issue with completing the final act, as set out in clause 18, while being a prisoner? For example, the hon. Lady touched on early release on compassionate grounds. Under those circumstances, there may be a prisoner who has been given a six-month diagnosis, and their early release may not be until the last couple of weeks of their life. Should they be deprived of going through the process and the assessment, albeit not enacting the final act until they have been released?

[Naz Shah]

Yes, I think there should be a deprivation of that final act, because there are vulnerabilities with that prisoner while they are inside a prison. What they need is not an option of assisted death at that point. That speaks to the amendment that I tabled, which is about making sure that we do not have the conversation in the first four weeks in any case, because a diagnosis of terminal illness affects people’s mental capacity and mental health. We know that: we have heard it from the psychiatrists. It is common sense; it does not take a genius to work it out.

We know that people in prison have additional vulnerabilities. We are having a debate about the issue of capacity, which we have clearly not agreed on. A person-centred care package needs to be about supporting the person, removing vulnerabilities, giving autonomy, and offering choices around accessing palliative care and medication, so that they are in a much stronger position to make an informed choice.

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

Debate between Neil Shastri-Hurst and Naz Shah

Committee stage
Thursday 30th January 2025 Public Bill Committees

[Dr Shastri-Hurst]

Q My question is directed to Dr Mulholland. Thank you to the Royal College of General Practitioners for the helpful written evidence. I want to pick up on something in it, which is summarised in paragraph 6 but gone into in more detail in paragraph 7, and that is around the refusal of practitioners to engage in the assisted dying process. I note the wording that has been used by the Royal College, which is that GPs and any other healthcare professionals can refuse “on any ground”. That is distinct from the Abortion Act 1967, which in section 4(1) sets out that it can be a conscientious objection. Can you explain why you have decided to take what appears to be a broader expansion of that definition, and why you have chosen that particular wording?

Dr Mulholland: We are aware that we have a range of views in RCGP across general practitioners. Some of them have very strong views for or against based on moral grounds, and some of those are based on religious grounds—traditional conscientious objection grounds. But others do not want to take part in assisted dying just because they do not want to; they do not feel it is part of what being a GP is, or part of what they trained for.

In discussion with colleagues today, someone shared with me that for 35 years they have spent their time trying to extend the life of patients—that has been our role—and to help them towards the end of life. It is a philosophical change if they start to think about whether the patient’s life should end earlier. There are some colleagues who may decide that for those reasons, they do not want to take part in this. There will be others who very definitely do. We have that range, so we feel that a doctor or a health professional should have the right not to take part on any ground, and that should be protected—they should not feel the obligation to do something that they do not feel is within their wishes.

[Naz Shah]

Q My question is to Dr Price. We heard yesterday from Professor House and this afternoon from Professor Owen, who were talking about capacity and coercion. They also talked about how different people’s life experiences impact their ability and their state of mind, and the lack of research or evidence in that area—the courts are grappling with those issues at the moment. Is there any evidence about the effect on patients’ mental health when they have a diagnosis of a terminal or serious physical illness?

Dr Price: There is a lot of research evidence around depression in people with palliative care needs and people nearing the end of life. We know that depression is common, and across a number of studies it is at around 20%—much more common than in the general population. We know that depression is strongly associated with a wish to hasten death, and that if depression is found and treated in that group of patients, there will be significant change in the wish to hasten death.

There are a number of associations other than depression with a wish to hasten death, and they include difficult symptom experience, poor functional status—needing a lot of help with things—and being socially isolated. Those are really key ones. They also include a sense of loss of dignity and feeling like a burden on others. These things can all come together to make life feel very unbearable. We know that there is also an overlap between a wish to hasten death, which is a response to suffering, and feeling that one is better off dead, ending one’s own life or harming oneself. I was involved in a study where we asked people both the wording of “a wish to hasten death” and the suicide question from the PHQ9, which is a depression screening tool. Those who had a wish to hasten death were 18 times more likely to also feel suicidal, according to the psychiatric definition, than people who did not have a wish to hasten death. There is a strong association.