Terminally Ill Adults (End of Life) Bill (Fifteenth sitting) Debate
Full Debate: Read Full DebateNaz Shah
Main Page: Naz Shah (Labour - Bradford West)Department Debates - View all Naz Shah's debates with the Department of Health and Social Care
(1 year, 5 months ago)
Public Bill CommitteesDoes my hon. Friend agree that the GMC writes this in detail for the purposes of treatment? The Bill is not about treatment, so therefore there is a difference in its very nature.
Lewis Atkinson
No, I do not agree. The GMC guidance in many ways talks about not accepting treatment. It is equally as useful in situations involving the withdrawal of treatments and the end of life. Fundamentally, it goes back to the point that I made in my speech yesterday on informed decision making and the autonomy of the patient. They have to be informed, whether they are seeking treatment, the withdrawal of treatment or no treatment at all.
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.
Building on the intervention by my hon. Friend the Member for Ashford, in most cases where life-support machines are switched off, by definition people are being supported to stay alive. In most cases, I would argue, they do not have the capacity—their capacity is not tested. The Minister appears very certain that the amendment would not be workable, but how can the Government be so certain of that, in the absence of any impact assessments on the workability of the Bill in the first instance?
I thank my hon. Friend for that intervention. Fundamentally, the balance of judgment of risk is based on whether, if we add additional words, phrases and amendments to a piece of legislation, it would have the result of decreasing the risk we are trying to address, or of increasing that risk. The Government’s view is that the Mental Capacity Act is a robust foundation for the decisions and processes set out in the Bill. Hon. Members are, of course, absolutely welcome to say that they do not believe that the Mental Capacity Act does what it should be doing and that that is why they have tabled amendments. However, the Government’s view is that the proposed changes would increase the risk of somehow creating a parallel framework to the Mental Capacity Act, rather than keeping it as the foundation. The system is very familiar with it and knows how it works, and that is the best way to minimise the risks that I think all hon. Members are keen to minimise to the greatest extent possible.
Without knowing the exact implications for the number of people who the hon. Member mentioned, it is difficult to answer her question, but fundamentally the Government’s position on every aspect of the Bill is to be clear that we want the Bill Committee to make informed decisions. Those informed decisions should be based on whether the Government think that amendments to the Bill would have a positive or negative impact on its workability and the legal framework. We also have to ensure that we protect the integrity of the statute book.
I thank the Minister for giving way for what might not be my last intervention. Everybody agrees that the legislation is new—it is not something that we have done before—so have the Government made any assessment of the training that would be required for people who deliver assisted dying? Who would set that training?
I recognise that it is an attempt to give maximum leeway to doctors. I think that is dangerous and puts doctors in a very difficult position. The BMA made the point that it is appropriate to enable doctors to raise this option as if it were just another treatment, even though it has also said it is not just another treatment.
I would challenge the BMA with the Medical Defence Union, which is the union that supports doctors in litigation. It points out, more correctly, that this is the worst of all worlds for doctors because they would be liable to complaints in either situation: if they do not raise it, a complaint can be made against them for not having done so; and if they do raise it, a complaint can be made against them on those grounds. We are being extremely unclear by leaving it entirely up to doctors. As I have said, it is not clear to me the circumstances in which it would be appropriate for a doctor to suggest an assisted death to somebody who has not raised it themselves. I would very much like to hear somebody tell me what those circumstances might be and to paint a scenario for us in which it is appropriate.
Surely all medical codes of practice explicitly or implicitly bar doctors from raising courses of action that they believe could unquestionably harm a patient. Does it therefore not follow that doctors only raise courses of action for patients that they believe will not unquestionably harm them, even if they believe some courses of action are more likely to be in the patient’s best interests?
That is absolutely right. Either this is a medical treatment—in which it should be obligatory for a doctor presented with a patient who qualifies under the Bill and has the symptoms that we are talking about to say, “By the way, there is also this option”, which is what I think my right hon. Friend the Member for North West Hampshire is suggesting—or it is not a healthcare treatment at all. Clause 4(1) states that they do not have to raise the subject, in which case they should not raise it, because to raise it is to put it on a par with other healthcare options and therefore implicitly, or indeed pretty explicitly, to say, “This is an option that might be good for you”, which is an enormous communication to make.
I go back once again to the difference between this and withdrawing treatment. I have to say this so many times because it is so important: this is not equivalent to withdrawing treatment because this is not specific to the illness being treated. A person can have a treatment or not, and that will address the condition that they are suffering from. The termination of life does not address someone’s symptoms, treatment, condition or illness; it kills them. It is a different order of intervention. I do not think it is a healthcare treatment at all, and it should not be treated as such.
Daniel Francis
It is a pleasure to serve under your chairship, Mrs Harris.
Of the three amendments in my name, I come first to amendments 319 and 320. Clause 1 outlines that the legislation relates to a terminally ill person who
“is aged 18 or over at the time the person makes a first declaration”.
It does not, however, refer to the age that an individual needs to be at the time of an initial discussion in line with clause 4. The definitions in the Mental Capacity Act, which have now been agreed as part of the Bill, relate to those aged 16 and over. Given that we have now accepted that, I presume that the discussions referred to in clause 4 could be held with 16 and 17-year-olds.
I appreciate that there will be different views on the matter, in relation to autonomy, but I think that even some of the strongest supporters of the Bill will be uncomfortable with those conversations being undertaken with someone as soon as that person turns 16. My amendments seek to make sure that the Bill includes the strongest possible safeguards, by ensuring that the relevant aspects of the Bill relate to those who have attained the age of 18. Surely it would make sense that if a person has to be 18 to agree to the first declaration, they also have to be 18 to have the initial discussion.
I now turn to amendment 339, which stands in my name. As hon. Members know, this issue has been a great preoccupation of mine on the Committee. I know that my hon. Friend the Member for Penistone and Stocksbridge wishes to comment on the matter, and I am aware that there may be concerns about some of the wording in the amendment, but it was tabled following the oral evidence we received from Mencap and was, in the initial instance, in the wording that Mencap requested.
I remind hon. Members of the evidence from Mencap. Dan Scorer talked to us about two principal concerns, initially. One was about preliminary discussions, and how the initial conversation is initiated and structured is a key area that Mencap has concerns about. He said that for Mencap
“that really leads into a conversation around rights to advocacy. It would be extremely concerning if people with a learning disability who were terminally ill were not fully prepared and supported for that discussion…For us, this links into the experiences that we had during the pandemic, which were touched on in yesterday’s evidence session by Dr Griffiths and others. We had people with a learning disability who were being consulted by medical professionals about ‘do not resuscitate’ or ‘do not treat’ decisions, and they were not being properly prepared for or supported in those discussions.”
He went on to say that Mencap wants to see
“a right to advocacy included within the Bill to support people considering their end of life options.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 269, Q350.]
We then move into the domain of amendment 8—tabled by my hon. Friend the Member for Blackpool South (Chris Web)—on initial discussions. As Dan Scorer told us, Mencap’s concern is about how discussions around assisted dying are initiated:
“For many people with a learning disability who are terminally ill and in an incredibly vulnerable position, doctors are very important and influential figures. Having a doctor come to you and say, ‘What do you think about assisted dying—is that something you might want to consider?’ could move them towards or into potentially accepting a course of action that they had never considered before.”
That is why he then went on to talk about advocacy supporting that discussion, saying:
“Individuals should be able to choose who supports them with those discussions, whether it is friends or family members or an independent advocate”.––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 273, Q355.]
In concluding, he said he felt that some of that
“would reduce the risk, which is absolutely there, that people could take the initiation of that discussion as a statement, ‘This is what you should do.’”.
He said Mencap’s position was:
“We absolutely do not want people to be in that position. We want strong safeguards and support in place if the Bill becomes law.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 280, Q366.]
It is no secret that my greatest concerns relate to capacity and supporting those with learning disabilities. As well as my earlier two amendments, I will press my amendment 339; I hear that there may not be a vote on it. I also want to touch on amendment 368, in the name of the right hon. Member for East Hampshire (Damian Hinds), as it also feeds into the conversation about the initial discussions.
There are swathes of written evidence from the Down’s syndrome community. The written evidence supplied by Lucienne Davies from Get On Down’s states:
“There is an obvious worry about informed consent for people with learning disabilities. As a group we are fully aware that people with Down syndrome are extremely vulnerable to the intentions and suggestions of caregivers, health professionals and authority figures, informed consent is therefore a major concern in end-of-life decisions.”
The Down’s Syndrome Research Foundation UK also emphasised the issues that arose during the covid-19 pandemic, when
“we saw a deluge of temporary changes sweep away many safeguards and rights. During the pandemic, individuals with learning disabilities, including those with Down syndrome, had a death rate of six times higher than average. It is not known how much the actions of health professionals played into this, but there are some disturbing concerns.”
The Portsmouth Down Syndrome Association has listed a whole range of concerns. It says that standard practice has not been followed with this Bill. I know that the hon. Member for East Wiltshire has mentioned some of this, but the association’s evidence says:
“Typically, the government recommends a 12–16-week period for public consultations to ensure comprehensive input and discussion. This Bill has not adhered to this standard, compromising the depth and quality of the consultation process. Rushing the legislative process has led to insufficient public engagement, overlooking diverse societal values and ethical viewpoints.”
The evidence goes on to lay out concerns about vulnerability to coercion, challenges in assessing capacity, ethical implications, misinterpretation of wishes and an over-emphasis on disability.
The all-party parliamentary group on Down syndrome has provided us with a lengthy submission. Again, I will not go into great detail on it, but it mentions expert consultation, the legal requirements and the challenges in front of us, those medical capacity considerations, the vulnerability of individuals with learning disabilities, additional complicating factors and ethical challenges, and, again, the learning disability mortality rate.
My intention is to press the three amendments in my name, amendments 319, 320 and 339. I have concerns, as many people do, about the discrepancy between the wording in clause 4 and in later clauses, in relation to the age requirement of 18. I look forward to the debate on amendment 339, which relates to learning disabilities; other amendments on the topic may well come forward in due course.
We have heard very clearly the concerns from the Down’s syndrome community and from Mencap about learning disability and the role of advocates, family members and carers. It is incumbent on us to listen to that advice and ensure the strongest possible safeguards for the people who are most vulnerable in this conversation. We must ensure that those safeguards are in the Bill.
It is an honour to follow my hon. Friend the Member for Bexleyheath and Crayford. I rise to speak to amendment 8, which stands in the name of my hon. Friend the Member for Blackpool South (Chris Webb), and amendment 276, in my own name. I note that the hon. Member for Solihull West and Shirley spoke to amendments 8 and 124, which overlap and complement each other, although they are slightly different.
Before I get to the crux of why the Committee should support amendment 8, it may be helpful to spell out what it would do. Currently, clause 4(1) reads:
“No registered medical practitioner is under any duty to raise the subject of the provision of assistance in accordance with this Act with a person.”
The amendment would change that to:
“No registered medical practitioner shall raise the subject of the provision of assistance in accordance with this Act with a person who has not indicated to that or another registered medical practitioner that they wish to seek assistance to end their own life.”
In a nutshell, that would mean that a doctor could not be the first person to raise assisted dying with a patient. The patient would have to raise it first, either with the doctor who had the initial discussion or with another doctor who referred the patient onward.
I urge Members to support the amendment, because it would provide another safeguard for vulnerable people. Many people affected by the Bill will be isolated; many will be poorly informed on medical matters and reluctant to ask questions of doctors.
Jack Abbott
My hon. Friend makes the case that some people will not be given the full range of medical options available to them. Presumably, though, the amendment would limit that even further, because they will not be able to understand assisted dying fully unless they have raised it themselves. We are actually restricting the full range of medical options for those people.
That is not what I am trying to get to here. Maybe there is some confusion on my part; I will make it clear as I carry on. The issue is that people already know that assisted death is an option in the wider context, just like when we talk about abortion, as my hon. Friend the Member for Broxtowe pointed out earlier. I am supporting amendment 8 because it further safeguards people, as the practitioner cannot be the one to raise it. Perhaps if I continue with my speech, my hon. Friend the Member for Ipswich may find his answer. We can come back to it if necessary.
As I was saying, many people will be poorly informed on medical matters and reluctant to ask questions of doctors. Many will have capacity under the Mental Capacity Act but, as we have heard from my hon. Friend the Member for Bexleyheath and Crayford, they will have greater capacity to take some decisions than others. For all those people, there is a danger that if a doctor raises this subject first, they will hear it not as a neutral comment, but as a suggestion. Not all of them will hear it as such, but some will.
Although not all expert witnesses who appeared before us endorsed that view, it is a concern that some raised. Others took a different view, such as the British Medical Association, which wants doctors to be able to raise assisted dying. It gave several reasons in its written evidence:
“Doctors should be able to talk to patients about all reasonable and legally available options…Doctors should be trusted to use their professional judgement to decide when and if a discussion about assisted dying would be appropriate, taking their cue from the patient as they do on all other issues…A prohibition would also create uncertainty and legal risks for doctors, which may inhibit effective doctor/patient communication and understanding.”
We cannot simply adopt or reject the amendment because of what the experts say. Instead, we must go through the arguments that the different experts made and consider which we find most convincing. It is our responsibility as legislators to make this decision. Personally, I found the voices raising concerns to be deeply convincing.
As with all this Committee’s inquiries, we must look at everything from the angle of safeguarding those who are vulnerable across society. For example, if someone is isolated, with very few close relatives or friends, and if they feel that they cannot challenge what the doctors say to them, they will be deeply trusting of or even dependent on their own doctor. That is not to say that we should be cynical about doctors, who are giving vital support to our most vulnerable citizens; it is to say that we have to look at the reality.
There is one kind of relationship between a confident and socially well-supported person and their doctor. For some who may lack confidence and have little or no social support, that relationship may well be very different. That point was repeatedly stressed by senior doctors who gave evidence to the Committee. We heard from witnesses that they do not think that this is a hypothetical danger.
Let me remind hon. Members of some of the expert witnesses who told us about the real risks posed. Dr Rachel Clarke, a palliative medicine doctor at Oxford, said:
“If, for instance, you say to a vulnerable patient who has just been told they have a diagnosis of terminal cancer, ‘Have you thought about assisted dying?’, I would suggest that stating it broadly like that is a form of pressure and that you are potentially unintentionally coercing that patient. The very act of raising assisted dying in that way will make that vulnerable patient think, ‘God, is this doctor telling me that my life is not worth living any more?’ Autonomy is much more subtle and complicated than we assume from outside.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 75, Q93.]
Jack Abbott
My hon. Friend makes a powerful point, but I would gently point out, as has been said already this afternoon, that the conversations between doctor and patient will not be that straightforward. A range of options will be presented to the patients. I do not think it would be a case of “Here is the option of assisted dying. This is your only option.” There will be a huge range of options on the table, as is right and proper.
It is the right and proper thing to do to give options, but we are talking about vulnerability. We have had the debate a few times now about people with vulnerability, and we heard during evidence sessions about coercion, capacity and all the issues relating to amendment 8 in respect of those with vulnerabilities being presented the option of assisted death. When I speak to my next amendment, I will cover some of this, because the Bill does not necessarily leave us with confidence that vulnerable people will be safeguarded. That is what amendment 8 also seeks to address.
Dr Rachel Clarke is a doctor who spends every working day with people who need palliative care. Her evidence cannot be laid aside. Dr Jamilla Hussain, who also gave evidence, is in favour of assisted dying in principle, but she raised significant concerns about the Bill as drafted, including on this issue. Dr Hussain said that her patients in Bradford have reduced access to palliative care, partly because they fear that doctors might try to end their life. She talked about how she worked with
“not only ethnically diverse communities, but those who are socially disadvantaged…I have taken this Bill to them and they have made it really clear—this is not just one community, but several, and I am not speaking on my behalf, but on theirs—that they are really fearful because this is what happened to them in covid. It affected everyone, but it affected some communities disproportionately because our services are not equitable. That could profoundly affect their healthcare, and not only in terms of end-of-life care. They are saying, ‘We will not even come to hospital ourselves, because we are worried that this would happen.’ This is not an academic or theoretical risk. We saw it happen in covid in Bradford. There were communities so worried that their loved ones were dying in hospital that they stayed at home and died earlier.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 190, Q247.]
Perhaps in some cases they died a death that could have been preventable. Dr Hussain said that it is “not a theoretical risk.”
Dr Hussain also said:
“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.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 199, Q259.]
That is what we need to do. We need to listen to what the doctors who are treating vulnerable patients say about the risks to those people.
Lewis Atkinson
My hon. Friend will recall that we heard evidence from doctors from Victoria, which has a so-called gag clause; I think it was Dr Furst who said that that was “really problematic”. What does my hon. Friend make of the guidance from the Victoria Government? It states that under that clause a patient who asks a doctor, “Can you give me all the options?” is not allowed to discuss assisted dying; indeed, if a patient says, “Isn’t there something you can do to help me put an end to this?” the doctor cannot discuss assisted dying either. Does my hon. Friend agree that that is an example of a gag clause being deeply unhelpful to doctor-patient discussions?
I am not sure that the amendment would be that kind of gag clause, so I disagree. If a patient says, “Give me all the options to bring an end to this,” the judgment of the doctor could be that assisted dying is an option. If that is the case, perhaps we need to look to the Government’s and Ministers’ wash-up process. When we are tidying up this Bill, I am sure that there will be plenty of opportunities for the Government to put in the significant words that safeguard patients. That is my feeling, but I thank my hon. Friend for his intervention.
The clear implication of the amendment is that if the patient requests to know what can be done to end their life, that is an invitation to raise the option of assisted dying; if they ask the doctor about what can be done to deal with the pain, symptoms and illness, they should be offered information on that. I am afraid that it comes back to the distinction between its being a healthcare option and not being a healthcare option. Does the hon. Lady agree that the evidence from Australia is clear that the minute there is a law like this, there will be challenges to the safeguards? Each safeguard will be seen as a barrier to a human right and a barrier to access. That is what the Australians told us.
Jake Richards
The evidence that I have heard, both in Committee and from other sources, shows that the gagging clause leads to complete absurdities. Doctors feel completely unable to look after their patients and inform them of their options, and this leads to conversations that involve winks and nods. That is exactly what the Bill is trying to stop. Does my hon. Friend agree? I sense not.
Unfortunately, I do not agree. I do not even agree with the term “gag clause”, which has been used a few times now. From where I stand, this is not a gag clause; it is an amendment that protects those who are most vulnerable. In Committee I have referred continuously to the most vulnerable, as have other hon. Members, and I will return to the evidence from Dr Jamilla Hussain. I do not agree with my hon. Friend’s position.
We need to listen to what doctors who are treating vulnerable patients say about the risks to those people, and then we need to amend the Bill to reduce those risks. Bluntly, there is a choice here. The British Medical Association says that if the Bill becomes law, doctors should be able to raise the subject of assisted dying with patients. Palliative medicine doctors such as Rachel Clarke and Jamilla Hussain, who deal with this every day, are deeply concerned by that prospect, and they want us to avoid it. There is no papering over this: the doctors disagree and it is up to us—the Committee— as lawmakers, and this House, to decide which of them makes the stronger case.
I genuinely think that the BMA makes a strong case. There is no doubt in my mind that it is motivated by empowering doctors to give the best possible care to their patients. It is natural that the BMA looks at existing practice among doctors. Currently, doctors can discuss all possible treatments and pathways with patients—the key words being “possible treatments and pathways”—so the BMA makes the case that that should also be true for assisted death.
In the end, however, I cannot agree with the BMA for one reason: assisted dying will be qualitatively different from every previous kind of medical intervention that has been legally permitted in this country. We have never permitted doctors to legally assist patients to take lethal drug combinations with the sole purpose of ending their lives. Some things really are different from what has come before; if the Bill becomes law, assisted dying will be one of those things.
In the interests of balance, would my hon. Friend also acknowledge the testimonies we heard from Dr Jane Neerkin, Dr Sam Ahmedzai and other palliative care specialists who had a very different view?
I do acknowledge that, but ultimately I am a Member of Parliament for my constituency of Bradford West, and we have a doctor who has been doing research with its communities. I come from a community where there is huge deprivation: Bradford West has two of the most deprived wards, and one of the youngest populations. During covid, people there were DNR-ed—so they do not have that confidence.
I accept that others may have different opinions, but I come back to the point that I made earlier: which case is more convincing? Do we raise the safeguards? Dr Jamilla supports assisted dying but she made it clear that, although she supports it for some people, who may well benefit from assisted death, the truth is that there are people who the Bill fails to protect. That is what I am speaking to, and that is what amendment 8, tabled by my hon. Friend the Member for Blackpool South, speaks to.
The Committee is talking about people who are facing the ends of their lives. On every day of their working lives, doctors who have spoken to this Committee talk to those people. They are treating exactly the kind of patients who may seek assisted dying if the Bill becomes law. They are deeply concerned that if doctors raise the subject of assisted dying with their patients it will, in too many cases, seem like a suggestion.
I appreciate that this is a private Member’s Bill and not a Government Bill, but that places an even heavier burden on us to get things right. We cannot ignore the testimony of those who have the most relevant experience. Too many Government Ministers, MPs and local councils from all parties, including mine, have done that in recent decades.
For example, the sub-postmasters and sub-postmistresses said for years that the Horizon system was not working, but Ministers from my party, and from the Conservatives and the Liberal Democrats, said that they were wrong. Time and again, they were dismissed. Ministers thought that they knew more than the people who were using Horizon on a daily basis. Now we know exactly who was right.
Similarly, for three decades, several thousand NHS patients, mainly haemophiliacs, claimed that they had been negligently given transfusions of blood infected with hepatitis and HIV. Minister after Minister, first from the Labour Government of the ’70s, then from the Conservatives, then Labour and then the Conservatives again, insisted that no such thing had happened. Some conceded that perhaps it had happened—but on a small scale. In 2017, to her credit, the then Prime Minister Theresa May announced a public inquiry into those claims. It turned out that the patients were right and the Ministers had been wrong.
That is what I am talking about. Several highly experienced palliative medicine doctors warned us—
The Chair
Order. I remind the hon. Member that while her arguments are valid, she needs to come to the end of her examples.
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?
My hon. Friend no doubt speaks from his experience of being a mental health nurse. I think there is space for that, and there are amendments that we will come on to when we talk about later parts of the Bill that deal with those initial conversations. I will be happy to address that issue then. I also welcome any more support that he can offer on those conversations based on his expertise.
As I was saying, in practical terms, we have evidence that in many cases, although not all, that desire will fall once a patient has had time to think through their diagnosis and once they have had good medical care for their illness or condition, and, in some cases, psychiatric support—a holistic package, perhaps even with social work intervention. Surely all Members would agree that we should give seriously ill people, who have just had such a shocking diagnosis and prognosis, time to think and to receive good medical care before they start the process of applying for assisted death. That surely applies to those of us who voted for the Bill on Second Reading every bit as much as those of us who voted against.
I will put it as plainly as I can: there is a significant risk from the Bill that people will be shocked by their initial diagnosis and prognosis, and, in that shocked state, will be more likely to apply for assisted dying. There is also evidence, however, that if they were to pause between the diagnosis and applying for assisted dying, they would be much less likely to have an increased desire to hasten death. This amendment would not be a perfect protection for people suffering from the shock of their initial diagnosis and prognosis, but it would be a clear safeguard that would protect many of them.
I want to make it clear that I was probably 60% against and 40% in favour of the Bill on Second Reading; I want to see a stronger Bill, with protections for the vulnerable. There is a significant group of vulnerable people who this Bill would put at increased risk—those who might take a decision to apply for assisted dying that, if they had had time to consider it and to receive medical and social care, many would not have taken. I ask hon. Members to support my amendment.
Dr Tidball
It is a pleasure to serve under your chairship, Mrs Harris. I will be supporting amendments 319 and 320 tabled by my hon. Friend the Member for Bexleyheath and Crayford. I am a great admirer of my hon. Friend’s work in championing people with learning disabilities, and his mission to give them a strong voice in this Bill. It is an area very close to my heart, having spent over a decade and a half working with people with learning disabilities and the advocacy organisations that support them.
I will, however, not be supporting my hon. Friend’s amendment 339, merely because I am drafting something to strengthen those measures even further. My amendments will go beyond amendment 339 and amend the code of practice so that seeking advocacy and access to an appropriate adult applies across the pathway to those seeking assistance, not merely in relation to the content of clause 4, as in that amendment.
I want to ensure that access to an independent advocate or appropriate adult is expanded to cover those with autism, a learning disability or a mental disorder, which is not currently covered by amendment 339. That will enable those people to engage with any of the provisions under this Bill through the support that they would receive from an independent advocate or appropriate adult.
As I say, I am also seeking to strengthen access to such advocacy across the pathway, through seeking assistance at each stage. I have huge respect for my hon. Friend, but I want to make sure that we specifically include the language of “mental disorder”, to make sure that that particular group of people with mental health problems is able to access independent advocates, as well as those with learning disabilities and autism.
I am also looking at whether we need a consequential amendment or new clause that would make the Secretary of State put in place provisions for regulations as to the appointment of persons as independent advocates in order to ensure that those seeking assistance under the legislation who have a learning disability, autism or a mental disorder can have proper access to such advocates. That would strengthen the resource provision and access for that group.
I have worked closely with Mencap on the amendments that I am drawing up and will continue to do so, and I would welcome input from my hon. Friend the Member for Bexleyheath and Crayford. Although I support his intent in principle, I will be tabling amendments to cover a broader group of individuals to access such appropriate adults and independent advocates, so that they can seek and access advocacy across the pathway and period of seeking assistance. My amendments would put access to appropriate adults and independent mental health advocates on a much firmer footing in the Bill.