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

Sojan Joseph Excerpts

Committee stage
Wednesday 26th February 2025 Public Bill Committees

[The Chair]

I remind the Committee that with this we are discussing the following:

Amendment 49, in clause 3, page 2, line 13, at end insert—

“(2) The burden of proof for an assessment of a person’s capacity is the balance of probabilities as required under section 2(4) of that Act.

(3) For the purposes of any such assessment, the principles set out in subsections (2) to (4) of section 1 (The principles) of that Act apply.”.

This amendment would set out the burden of proof for capacity assessments as being the same as the Mental Capacity Act 2005 and apply the principles from subsections (2) to (4) of section 1 of the Mental Capacity Act 2005.

Amendment 50, in clause 3, page 2, line 13, at end insert—

“(2) An assessment of a person’s capacity under this Act must include, but is not limited to, an assessment that the person understands—

(a) the options for care and treatment of the terminal illness, including—

(i) the extent of prognostic certainty of their illness or condition, and

(ii) the likely effects on day-to-day functioning, symptom management, and pathway to and experience of death of—

(A) relevant and available care and treatment including palliative care, hospice or other care,

(B) withdrawal or absence of care and treatment, and

(C) requesting assistance in ending their own life under the terms of this Act.

(b) a decision to proceed under this Act does not prevent or make unavailable any care and treatment provision that would normally be provided.

(c) the person’s decision to proceed under this Act must be theirs alone and not bound or directed by the views or decisions of others.

(d) the person is able to change their mind at any stage of the process for requesting assistance to end their own life under the provisions of this Act, regardless of previous decisions.

(e) a decision to proceed under this Act will lead to the provision of a substance that is reasonably expected to end someone’s life following administration and is reasonably expected to be irreversible.

(f) relevant legal consequences from proceeding with a request for assistance to end their own life, including life insurance and categorisation of death certification.”

This amendment would set out certain non-exhaustive requirements for a finding that a person has capacity.

Amendment 398, in clause 3, page 2, line 13, at end insert—

“(2) The following provisions of the Mental Capacity Act 2005 shall not apply to this Act—

(a) sections 1(2) to (4)

(b) sections 2(2) and (4).

(3) Section 2(1) of the Mental Capacity Act 2005 shall apply to this Act as if it read as follows—

‘For the purposes of this Act, a person lacks capacity in relation to a matter if at the material time he is unable to make a decision for himself in relation to the matter.’

(4) A person shall be considered not to have the capacity to make a decision to end their own life unless it is proven beyond reasonable doubt that they do have that capacity.”

This amendment disapplies several principles of the Mental Capacity Act: the presumption of capacity, the duty to help someone reach capacity, the irrelevance of an unwise decision, the application of the balance of probabilities, and the diagnostic test. It retains the functional test of capacity and requires that capacity be proven beyond reasonable doubt.

Clause stand part.

[Sojan Joseph (Ashford) (Lab)]

I was talking about the training, which we have talked about many times in this Committee, for the people who may carry out capacity assessments, and about my experience of completing those trainings as part of my profession and carrying out capacity assessments for the past 22 years. We heard oral evidence from Dr Rachel Clarke, who has extensive experience in training doctors and nurses in capacity assessments. She said:

“I would suggest that anybody who pretends that those assessments are easy and routinely done well in the NHS has not got enough experience of observing that happening. I teach capacity assessments to doctors and medical students, and it is often the case that they are very poorly conducted.”—[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 71, Q85.]

That is my experience as well.

We also talked about the second doctors. In the NHS, especially in the mental health sector, my experience is that many of the doctors are not in substantive roles—many locum doctors work in many areas. With my experience, I am not confident that trainings are being taken up by many of the people working in the NHS. I do not think that any of the trusts would be able to evidence that they have an 100% completion rate for their mandatory training. Especially for locum doctors, there is no monitoring system by the trusts. I am therefore not confident that this training would be robust enough to support some of the claims.

[Danny Kruger (East Wiltshire) (Con)]

I completely agree with what the hon. Gentleman is saying about the importance of getting the training right, but even if the training were right it might not be robust enough. The point was made earlier in the debate that there is a clause towards the end of the Bill about codes of practice that specifies that medical professionals must have regard for a code of practice that “may” be set out by the Secretary of State. Does he agree that that is a very thin defence to rely on? We are not talking about anything in primary or secondary legislation; it will be in a code of practice that may be laid down by the Secretary of State with no obligation or legal liability for a doctor to follow it. We are talking about some layers down from what needs to be in the Bill in terms of the assessments that should be conducted.

[Sojan Joseph]

I agree. As part of the code of practice, professionals are expected to complete the training that has been outlined already, but I am not confident that that is actually happening. Saying that there will be training does not reassure me that it will be robust enough.

[Kim Leadbeater (Spen Valley) (Lab)]

The hon. Member for East Wiltshire seemed reassured by the fact that there will be training in the Bill—it is on the face of the Bill and will therefore definitely take place—

[Kim Leadbeater]

I am pretty confident that an amendment is going to be tabled, if it has not been already, that would change that “may” to “must” in the clause on codes of practice.

[Sojan Joseph]

I would be happy to see the Bill make a strong case that the people who will take part in this process have training before they do so.

My larger issue is around the independent doctors. Again, I will use some examples of how the Mental Health Act 1983 has been carried out in its current format. Those cases always use a section 12-approved doctor, who is a second doctor and they may not have had any kind of contact with the patients. We may or may not end up in that sort of similar situation. That is the point I was making earlier.

As the Royal College of Psychiatrists mentioned, capacity can change and decisions are opinions with margins of error. I mentioned my experience working in mental health wards earlier, and the hon. Member for East Wiltshire talked about the capacity assessments carried out when patients are standing by or threatening to jump off a bridge. I am not comparing these situations or saying that they are similar, but we have to make decisions based on capacity. In my experience of discharging people from hospital in a mental health unit, when somebody is threatening, “I’m going to kill myself if you discharge me”, the multi-disciplinary team—the doctors and the nurses—have to make a decision on whether to discharge the patient based on their capacity at that time.

Capacity is assessed based on whether someone is able to understand information—can they retain, use and weigh information, and can they communicate their decision? We cannot compare that with the situation of somebody asking for assisted dying. I want to make it clear that the capacity assessment is the key. I would love to support this amendment. As I said earlier, this issue was one reason I voted against the Bill on Second Reading, but passing this amendment might change my position and I would love to support it.

[Jack Abbott (Ipswich) (Lab/Co-op)]

It is a pleasure to serve under your chairship, Mrs Harris. I will speak specifically to amendment 50. I fully appreciate and accept the points made on a number of occasions during this debate by my hon. Friend the Member for Stroud—that many proposed changes either already feature in the Bill or are the current course of practice for doctors and other medical professionals. As I have said previously, I am not generally in the business of supporting amendments that, in my view, overcomplicate issues, are ambiguous and could lead to other consequences or are simply repetitious, but I do not think that amendment 50 would do those things.

Some proposed amendments are featured in the Bill, either directly or implicitly, but I do not see how amendment 50 would overcomplicate or lead to ambiguity. It is a quite direct and, dare I say, common-sense ask that we should all support. I take the point made by the right hon. Member for North West Hampshire on proposed new subsection (2)(f) of clause 3, as inserted by amendment 50, though I confess I did not read it in the same way that he did. I read it as saying that anyone looking to go down this route should be made aware of the legal consequences. That is a sensible suggestion.

I do not expect a doctor would be going into people’s bank accounts or deeply understanding their legal affairs, but due consideration, advice and information should be imparted to the person who is applying. That is how I read it; I did not think it would be a hugely intrusive, in-depth study into a person’s personal finances.

--- Later in debate ---

[Sojan Joseph]

Does the Minister agree that when it comes to withdrawing treatment, especially switching off a ventilator, the decision is often made between the medical professionals and the families, and most of the time the patient has no say in it?

[Stephen Kinnock]

What we are talking about today with this Bill—and the job of this Bill Committee is to improve the Bill—is a number of safeguards that ensure that the patient is absolutely consulted and positively and constructively engaged every step of the way. In that sense this is different from the situation my hon. Friend describes. I bow to his expertise as a medical practitioner in this field, and it sounds as though what he has described is not an ideal situation, but certainly this Bill, it would appear, has safeguards that ensure that the situation he describes should never arise.

--- Later in debate ---

[Naz Shah]

I have just finished that example, Mrs Harris.

Several highly experienced palliative medicine doctors have warned us that doctors raising assisted dying with patients would have two very harmful effects. The doctors said that it would scare patients away from palliative care, especially those from minority communities or disadvantaged backgrounds. They also warned that in some cases, if a doctor raised the subject of assisted dying with a vulnerable patient, that person would not hear it as a possibility being discussed; instead, they would hear it as a suggestion from a powerful person who, in some instances, they might be scared to challenge.

The question we have to ask ourselves is: are we going to be that Committee that ignored the evidence of the experts who deal with this issue on a daily basis on the frontline with those very people at the end of life who the Bill is actually aimed at? Or are we going to risk being part of a future assisted dying Bill scandal because we placed ourselves above those experts by supporting a view of a wider body? That body has very valid reasons—no doubt—from its own position but is not, in its entirety, a frontline delivery expert, as palliative care doctors are.

Those warnings are too stark for me—for any of us, I submit—to ignore. We cannot ignore the concerns that those doctors have raised. If any Committee member accepts the concerns of the experts, that a vulnerable person would not hear assisted dying as a possibility being discussed but instead as a suggestion from a powerful person, I sincerely hope that they will vote in favour of this amendment.

I turn to amendment 276, which I tabled. It would add a subsection to clause 4, which concerns the initial discussion between a person with a severe illness and a medical practitioner. This new subsection would impose a pause or an interval of 28 days between a person receiving a diagnosis and prognosis of the illness that might end their life within six months, and when they could speak to a doctor about assisted death. Currently, there is no such interval. I tabled this amendment in response to the concerns raised by several senior and experienced doctors in evidence to this Committee.

Several doctors who gave evidence—especially the psychiatrists—noted that a diagnosis of serious illness often leads to a major increase in depression and a desire to hasten death. However, on depression and the desire for death, the psychiatrists also said that when a patient gets treatment for their physical symptoms alongside social care and sometimes psychological treatment, that person may well change their mind. This amendment aims to prevent people from opting for assisted dying while they are suffering from the initial shock of having a serious illness diagnosed.

Let me talk in more detail about some of that evidence. In particular, I will bring the Committee’s attention back to Dr Annabel Price, vice chair of the liaison faculty at the Royal College of Psychiatrists, who has great expertise in this field. I will quote from her evidence at some length, because she talks very clearly about the evidence that we have about the effect of a diagnosis of serious illness on somebody’s mental health. Her evidence raises very important concerns about how the Bill, as it is written, would affect patients who have just received a diagnosis of serious illness. She said that

“if we think about people with palliative care needs towards the end of life—so the people who would qualify under this Bill—around 20% will have diagnosable depression, around 10% will have a wish to hasten death, and around 4% will have a more persistent wish to hasten death. Those wishes may not be expressed unless they are assessed for. One of the things that I would do in my clinical practice would be to look for treatable mental disorder in people who express a wish to hasten death.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 270, Q351.]

Dr Price went on to say:

“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.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 275, Q359.]

Dr Price also went further and said:

“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.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 275-276, Q359.]

I have quoted Dr Price at length because she sets out clearly some of the problems we need to address before the Bill will be fit for purpose. From her evidence, we know that when people receive a diagnosis of a serious illness with a prognosis that they may have around six months to live, that has serious psychological effects. We also know from her evidence that one of those psychological effects is what she called an increased desire to “hasten death”. She said that, in some cases, this means that the patient becomes “suicidal”, while in others it may not mean that the patient is suicidal, because they do not want to positively do something such as killing themselves, but they do wish that death would come to them sooner. It should be clear to us that a desire to hasten death will certainly be relevant to the decisions of any patient who wants a discussion on assisted dying.

Finally, and perhaps most importantly, Dr Price provided evidence that if a patient’s desire to hasten death increases immediately after the diagnosis of a serious illness, it is likely to decrease once several things have happened. In a psychiatrists’ survey of patients, they found that the desire to hasten death often decreased once the patient had time to reflect on their diagnosis and prognosis; once they had received adequate medical care; once they had social care to allow them to live their day-to-day lives and, in some cases, to relieve their isolation; or in some cases, once they had psychiatric support and adequate pain relief or intervention to relieve them of their pain. In practical terms, we have evidence that a patient who has just had a diagnosis of serious illness with a prognosis of possible or likely death within six months would be more likely to want to die.

[Sojan Joseph]

The amendment would add a 28-day period between the diagnosis and the start of the conversation about assisted dying. Having listened to hon. Members speak and given the evidence that we have heard, does my hon. Friend think that patients should have not only a 28-day gap, but access to a psychiatrist before the discussion of assisted suicide should start?