(1 week, 3 days ago)
Public Bill CommitteesOne of the major concerns that we have heard from members of the public and MPs relates to the importance of ensuring that appropriate safeguards are in place, so that people make genuine choices and do not request an assisted death because somebody else has pushed them towards it. For that reason, it is vital that subsection (2)(b) is as comprehensive as it can be. It currently refers specifically to a person having been “coerced” or “pressured”, which covers only the more direct kinds of influence, not more subtle ones. It seems clear to me that amendments are required to ensure that more subtle kinds of influence are covered adequately, and that clinicians do not just look for obvious signs of coercion or pressure when considering eligibility.
In her oral evidence on 29 January, Dr Mullock said:
“In terms of the Bill that we are discussing, one possible weakness here is that it identifies, only very obviously, problematic conduct in terms of coercion or pressure exerted by another person, and actually the kind of undue influence that might occur might be very subtle. More needs to be done to recognise that and the subtle encouragement that might take place, where a relative might frame their support for the person seeking to die in terms of, ‘This will be better for you,’ and, ‘Have you considered this?’ That is not necessarily an example of clear abuse, so when the person seeking to die then consults the doctor, they are not going to characterise what has happened to them as coercion or abuse. More needs to be done to discuss with the person whether or not they have been encouraged by the people around them.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 162, Q204.]
Amendment 23 would add the term “unduly influenced” to the clause. It is an important addition, as it is a recognised term in law. It is designed to ensure that relationships of dependence are considered. In some cases, there is no bad intent, but there is a power differential, subtle as it may be, and it is important that we recognise how strong it can be. A child not wanting to disappoint their parent; a wife not wanting to go against her husband’s wishes—there may well be no threats or explicit pressure, and there may be a lot of love shrouding it, but the influence is there and it is strong. That is why the concept is applied in probate cases to test whether someone has faced influence, domination or pressure that prevents them from exercising free and independent volition with regard to the act. It has also been applied in medical decisions, including over a refusal of treatment that can lead to death. For example, there was a case of a Jehovah’s Witness who refused a lifesaving blood transfusion under undue influence from her mother. It is therefore a natural addition to the Bill.
In important judgments, the courts have said that undue influence will have more impact on people who are very tired, in pain or depressed, and that
“a patient in a weakened condition may be unduly influenced in circumstances in which if he had been fit, he would have resisted the influence sought to be exercised over him.”
This legal concept could have been designed for the context of assisted dying. That is why it is important that the amendment is made. In her oral evidence on 28 January, Dr Cox said,
“I would say that you cannot always identify coercion. You can identify it when it is very obvious and extreme, but when it is very subtle, we cannot always identify it. After the event, there is nobody to tell us about coercion, so it is very difficult to monitor.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 73, Q90.]
I would also like to point out that California’s law prohibits coercion or undue influence, so there is established precedent in using this phrase in the safeguards of assisted dying law. If we have the ambition for our law—if it is to pass—to be the safest in the world, we need to add the term “undue influence” as a minimum.
Even with that additional safeguard, however, Dr Spielvogel rather worryingly said in his oral evidence,
“I have seen assisted dying laws go into practice across numerous states and have helped many, many people through this process, and I have never seen a case where I even suspected coercion.” ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 101, Q139.]
Richard Robinson of Hourglass, in his oral evidence, said,
“I think that coercion is underplayed significantly in cases of abuse of older people…One of the biggest issues we face is the fact that we have no idea of the levels of training that healthcare professionals and the judiciary receive to understand and recognise coercion. That leaves us in a situation where medical professionals say that coercion in these circumstances is minimal, but people need to understand what coercion is and how to recognise the signs of it in the first place, especially bearing in mind that the vast majority of cases that we see take place in the home and by family, rather than by professionals.” ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 158, Q196.]
Additionally, psychiatric and legal experts have said that undue influence is relevant in this context. In written evidence, Professor Allan House refers to undue influence as
“coercion in its less overt or threatening forms”.
He also draws attention to the great risk of undue influence in the case of couples seeking assisted suicide at the same time. The probate lawyer Tamasin Perkins, in an article on the Bill, says,
“Undue influence or coercion is depressingly common in the arena of contested wills and gifts.”
She suggests that the current law on undue influence could be usefully incorporated into the Bill. To those who worry that adding undue influence could make things more difficult for clinicians when assessing, I would say that it is absolutely right on something of this gravity that rigorous consideration is given to the possibility of undue influence.
I turn to amendment 82, which adds the term “encouraged” to coercion and pressure. This amendment is in line with Dr Mullock’s advice in both her written and oral evidence. It is important to note that encouraging suicide is currently a crime under section 2 of the Suicide Act 1961. It is also important to note that the Bill does not decriminalise encouragement, only assistance. Clause 24 decriminalises only the assistance component, not the encouragement component. Thus, if the Bill were to pass, encouragement of assisted dying would still be a crime. That is absolutely right and something that I fully support.
As encouragement of suicide is clearly recognised as a heinous crime, it surely must follow that when considering whether someone is eligible for such assistance to end their life, consideration is given to whether they have been a victim of such a crime. This feels like a rather basic safeguard that is missing from the Bill and must be rectified. As former Attorney General, Victoria Prentis, has written,
“maintaining the prohibition on encouraging suicide is key to protecting vulnerable people”.
She says it is a problem, though, that
“doctors and judges under the bill are not required to check whether the person’s decision is their own or whether they have been encouraged by others.”
She goes on to say that she hopes the Committee will support my amendment, and David Hughes—formerly of the Law Commission—says that keeping the offence of “encouragement” would help to prevent “insidious pressure”.
The hon. Lady uses the term “encouragement”. If I were in a situation where a loved one wanted to access assisted dying, and I said I supported their wishes, would that fall under the scope of encouragement? We do not want to end up in a situation where people who support their loved ones end up dragged through a legal process, when it is actually the case that they are there to enable their wishes, rather than pushing them to it. How would she differentiate between those?
That is an important point. Obviously, case law becomes quite important in this. Supporting someone’s decision is very different from encouraging someone who was not in the place of wanting to go through with assisted dying. Again, these things do sometimes end up in the courts, because sometimes it can be a grey line. It is important that we have this protection. Right now, it is an offence to encourage someone to commit suicide, and we need to recognise that. That is the law right now.
(1 week, 4 days ago)
Public Bill CommitteesThat is an extremely wise observation. I regret enormously that there was not more opportunity, before the legislation was drafted, to have those discussions between experts, advisers and others who really know what the Mental Capacity Act means and whether it is sufficient for this purpose. The best that we can do now is reflect on the evidence that we have received. In many ways, that is what I am hoping to address with my amendment: to redefine “capacity” as “ability”, to transfer the responsibility for defining how ability should be assessed under the Act to the Secretary of State for further analysis and consultation, and then for that to be laid out properly.
When assessing people’s ability to make the decision, we want to take into account their ability to understand, retain, use and weigh information, and to communicate the decision. That will still be at the heart of an assessment of whether an individual is making the decision for the right reasons. A whole range of things might affect a person’s ability to make the decision. I have mentioned many times mental disorders such as depression, which is more common in people nearing the end of their life. Delirium, which is common in people with advanced illnesses, needs to be assessed. There is the complexity of people who have a physical terminal illness alongside a mental disorder; I think particularly of people suffering from an eating disorder, which is primarily a mental health condition but clearly has physical health implications. If the mental health condition is not treated or is resistant to treatment, the physical manifestation of the eating disorder can quickly become a terminal illness. That is a really important point that we need to reflect on.
The feelings of hopelessness that may come alongside a diagnosis of terminal illness may affect a person’s ability to weigh information. Anxiety can amplify their fears of future suffering, and types and doses of medication can affect capacity. All sorts of people can suffer vulnerabilities from external factors such as the lack of realistic alternatives like palliative care services; overt or implicit coercion; personal losses including bereavement; poor housing; financial hardship; and loneliness and social isolation. Understanding and responding to those vulnerabilities is at the centre of suicide prevention, but absent from the Bill.
We have to remember that the Bill would apply to people who are said to be within months of death but may not be, to those who may die within months but otherwise have a very good quality of life, and to people whose trajectories to death vary greatly. In his written evidence, Professor Allan House states that
“careful inquiry is justified because a statement about wanting to end one’s life cannot be simply taken as the result of a straightforward rational decision to choose one type of end of life care over others. Simply checking mental capacity and asking about coercion is not adequate.”
I understand the concerns my hon. Friend is raising about assessing mental capacity. Does she acknowledge that throughout this process mental capacity will be assessed not once but multiple times? What does she say to that?
I say to that what I have been saying throughout: a test of mental capacity is not sufficient for this Bill. For example, the Royal College of Psychiatrists states that the Mental Capacity Act
“is not sufficient for the purposes of this Bill. Extensive consideration needs to be given to what an assessment of mental capacity should consist of”
for decisions relating to assisted dying or assisted suicide—
“and, indeed, whether a determination through such an assessment can be reliably arrived at in this novel context.”
I believe that what the Royal College of Psychiatrists means by “novel context” is that no legislation of this type has been framed before and we do not have any precedent to guide us in terms of what an appropriate determination of capacity might be.
(1 week, 4 days ago)
Public Bill CommitteesI 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.]
I completely agree with the point the hon. Lady is making about mental capacity applying to eating disorders, but would that not be better debated in relation to defining an eating disorder as a terminal illness, rather than in regard to mental capacity?
I will be speaking to the issue in relation to terminal illness, because it relates to my amendment in another grouping. The reason I am making this point now is that it also impacts on capacity. When we are assessing capacity—again, this talks to the point—the truth is that nobody in this Bill Committee or otherwise can tell me that the Mental Capacity Act has been applied to the question, “Would you like assisted dying?”
It would be if we were making treatment equitable, but if we apply the test of legality, and this is about pain—we have already seen the amendments tabled by the hon. Member for Harrogate and Knaresborough, which would widen the scope from six months to 12 months—where do we draw the line in terms of equity and legality? The Bill is open to a lot of legal challenges, and if we want to go down that route, there would be plenty of them.
There is a fundamental difference between trying to ensure that people have equal access to assisted dying and prohibiting a specific group or category. Does the hon. Member understand that?
I understand that perfectly well. On the idea of not giving people assisted dying, as the Bill stands, the category also includes people who decide to stop eating or taking insulin and people who decide not to go on dialysis. It includes a whole host of illnesses. If we are talking about the legal challenges, which my hon. Friend the Member for Stroud started with, the legal challenges for the Bill are vast as it stands.
The idea that it is the fundamental denial of a human right is not quite correct. We are talking about the denial of a provision in a Bill that has not come into law. It is a potential legal position; it is not necessarily a human right yet. If the Bill comes into force, at that point it becomes an option that could be denied. There are many prisoners. Prison serves many purposes, one of which is to reform. There will be many prisoners who go in there and get a degree in criminality because they are surrounded by other prisoners. There are people who make choices.
In the first four weeks we should not have the conversation around assisted death in any case. I have tabled an amendment to that effect and will speak to it when we come to it. In the meantime, a person has an added layer of pressure if they are in prison. It does not mean that everybody is necessarily vulnerable from a starting position. I agree that there may be prisoners who are not vulnerable, but there is an added pressure if somebody is homeless or in prison, not having family or security, that would no doubt compound their mental health. Whether that is a slight or a large impact is for somebody else to assess, but as it is I support the amendment.
I can understand where the hon. Lady is coming from, but I wonder whether she has any specific examples of groups such as people who are homeless or prisoners having other rights denied to them. That is what I am struggling with, although I can understand her point about people being vulnerable. The only other example that strikes me is that people who are incarcerated are unable to vote. I cannot think of any other instance where people would have any particular right removed from them. Does the hon. Lady have any other examples or comparable situations she can share to help us?
The hon. Member makes a valid point about ensuring that there is documentary evidence. Does he not feel that that will be covered at a later point in the Bill when we debate the amendments on training, and specifically on ensuring a coherent way in which all the doctors and people in the process set about recording?
The hon. Gentleman is a great stickler for doing things in the right order. I am grateful to him for calling us to order on that point again. I dare say that he is absolutely right. All these issues are rather interwoven through the Bill.
I will finish on a point about the role of the Court of Appeal. A rejected application—although not an approved application, I am sorry to say—can be appealed under clause 12. For the Court of Appeal’s review to be substantive, it must surely be able to review the evidence as fully as possible on what happened throughout the terminally ill person’s application.
(3 weeks, 2 days ago)
Public Bill CommitteesQ
Alex Greenwich: New South Wales was last in the nation when it came to adopting voluntary assisted dying, and that was actually beneficial because we were able to draw on the experiences of particularly Victoria and Western Australia to make sure that things like the gag clause were not in place. With all respect to the introducer of the Bill, as a result of the Australian experience this is not a revolutionary law reform. It has been tried and tested, we have appropriate safeguards in place throughout Australia, and they work.
(3 weeks, 2 days ago)
Public Bill CommitteesQ
I notice that you have also spoken a lot about misinformation; how do we tackle that? How do we make sure we are dealing with facts rather than speculation? In particular, how do we provide reassurance to marginalised communities and people with disabilities, who are understandably nervous about this change in the law? When it comes to safeguards and protections, what does best practice look like?
Dr Ward: To take your last point first, we must involve them in the process and have an open dialogue with them. That means not just in the consultation process, when you are considering passing legislation, but when you have your implementation taskforce, on which you must make sure you have representation from across all the stakeholders involved, including people with disabilities and people with terminal illnesses.
I would point to the fact that best practice is about balancing the autonomy, dignity and compassion that the Bill aims to achieve by giving people the option of assisted dying, while also protecting vulnerable people who feel that there are worries and concerns. However, having worked in this area for 13 years and seen people who would really benefit from having this option, and living now in a jurisdiction that has it, I would point out that some of the most vulnerable people I have seen are the terminally ill who want and need this choice. It is about taking a holistic and evidenced-based approach.
You as a Committee will hear from the great and the good across the board, and I am pleased that the Committee is taking account of lived experience, because that is very important to inform the decision-making process. It is about making sure that we are going to the source of evidence and using peer-reviewed data and Government data. Again, as I said earlier, you really need to trust your international colleagues who have gone before you on this. We need to consider what the Bill does versus inaccurate perceptions of or speculations on what it might do. The task here is to consider what is in front of you, not what might happen down the road.
Q
Dr Ward: Look: assisted dying is the same as any other healthcare choice. It is always going to be limited. We are not going to reach everyone that we absolutely would want to. There are people who want to have this option and this choice who will not qualify under a terminal illness definition, but we have to draw the line somewhere. We looked at international evidence from Commonwealth countries that are very closely linked to Scotland and the UK. We drew the line with the definition that the person has an advanced progressive illness from which they are unable to recover and that will cause their premature death. For us, that demands the support of Members of Parliament in Scotland and the support of the public.
I really stress the fact that each jurisdiction has to legislate according to its own constitutional, societal, legal and cultural considerations, which is what we have done in Scotland. That is the definition that is working for us now. Previously, there were more liberal attempts that did not gain the support of the House. We believe that we have arrived at a situation that is very similar to the definition of terminal illness here in Westminster, and that is both safe and compassionate but also draws the line so that people who should not be able to access this do not.
Q
Professor Owen: This is an essential question. I work clinically in the over-65 age group, where there is a lot of terminal illness, some of it in the last six months. You have to understand the population. The population is typically over 65 and frail. There can be a terminal illness, very typically with comorbidity. That comorbidity is often mental health comorbidity. Depression is at rates of 20% or thereabouts. Delirium and cognitive impairment is very common and often not picked up. There is patchy safeguarding, patchy access to social care and, as I know you have been hearing, patchy access to palliative care.
That is the ordinary person in the NHS. I know people who select into assisted dying are not necessarily that mean person, so to speak, but that is just a picture of what it looks like for me when I go to work. That is where one starts. Now think about burden. Well, this is a group that do feel very burdened. You might think some of that is excessive; some of it maybe is natural, given the life stage. So it is a mixed picture.
When it comes to pressure and coercion, I know you have been grappling with this a lot as a Committee, and I know there have been some amendments that address this. We have talked about clause 26 particularly in relation to this. Of course, when it comes back to the training question, you can take evidence on the state of safeguarding and how people are really able to assess coercive control, domestic violence and so on.
I would like to draw attention to something else that I am not sure has come so much to the attention of the Committee, which is not the offences or the criminal side of this; it is the common or garden capacity assessment side of it. This relates really to clause 1. It is the issue of how you deal with interpersonal pressures on somebody in a situation where there may be a mental health problem and there may not even be a diagnosis. You might be talking about a kind of cognitive impairment that has not reached the threshold for a diagnosis of dementia; you might be talking about a kind of mood problem or an anxiety problem that is sub-clinical; or you might be talking about a level of intelligence that is not clinically a learning disability. But it is there and it is interacting with a form of pressure within a family, let us say, which is often not malign in its intentions, but it exists. It is a very overvalued relationship, for example, with a strong sense of loyalty to somebody, or an enmeshment, for example.
What you have are situations where there is an impairment and also an interpersonal pressure. They interact and they amplify each other. That can have an important consequence in terms of the functional ability of mental capacity. Outside of the assisted dying context, when you look at that in the Court of Protection, which has been struggling with quite a lot of cases like this, that phenomenon of interaction that I am talking about between interpersonal pressure and impairment is recognised. It struggles with it. I have been involved in some research to try to structure the understanding of it, but it is not at the point where it is a kind of training manual that you can lift down from the shelf and roll out across the workforce. It is much more in a kind of research and development phase.
So it is important to draw attention to pressure not necessarily as malign in its intention, but which nevertheless operates in these situations and can have a subtle impact on the functional test of decision-making capacity. To bring us back to what the decision-making capacity is that we are talking about, it is the decision to end one’s own life.
Q
Claire Williams: I absolutely agree that a panel/committee approach would have better safeguarding for patients, because the decision is being made collectively with legal expertise and with other healthcare professionals—that might be palliative—or ethicists like myself. It is having that collective view, ensuring that everybody is happy and that that is exactly what the patient wants. I believe it should be a committee/panel-based approach for the final decision. As I said before, expecting a High Court judge—just one individual—to make that decision alone is hugely burdensome and not an approach that we should be taking.
Q
Professor Preston: There is a bigger and bigger conversation in a lot of these countries, including the Netherlands and Switzerland, that this is not about healthcare. I know that sounds a really strange thing, but it is about self-determination and a life choice. I remember someone saying to me, “Well, you wouldn’t check who I’m marrying.” They feel it is such a personal choice. I think patients do bring this up. They bring it up all the time now. Studies in Spain have shown that if a patient has a desire for hastened death, the best thing you should do is explore that desire. Why do they have that desire? How can we help you? Are there other needs we can meet? Most people will not want to then go ahead and have an assisted death. This is a minority of people. Could you remind me of the rest of your question?
If you have systems where assisted death is offered outside the healthcare setting, as in some of the countries around the world that you have mentioned, how does that limit people’s access to it? Do you think that has an impact?
Professor Preston: I think it almost enhances their access to it. At the moment, they get lost in the system. They are usually trying to find these two magical doctors—in a lot of countries, you still have to find those two doctors. Most doctors, even if they approve of the idea of assisted dying, do not want to be part of it. They might assess, but they might not prescribe. They might prescribe, but they would not administer. Trying to find those doctors to do it is really quite challenging. That is what we get back from the bereaved family interviews. How do you navigate a system where you cannot access the people you need to get to? People go doctor shopping—they are going to multiple doctors until they get the right answer.
If you keep it safer, outside of healthcare, people can talk to their doctor—they will mainly talk to their nurses, because they are the ones who do end-of-life care predominantly—and they can say, “Actually, that is not something we can do, but if you want to see, we have a stand with information about it. This is the service you can go through.” It is the same with the GP—things like that. I think it might actually make it easier for people to navigate. That is where I came to the idea of keeping it outside. It is a supportive way for patients and families because, on top of all this, they are dying. They are having a really difficult time and we are trying to get them to navigate services that are incredibly difficult when you are trying to find two doctors.
Just finally, on top of that, it is quite secret who does this. Doctors do not want to tell people. I have had people who do this—who might just assess and may not prescribe or administer—and they do not want people to know in palliative care because it does not go well for them. They are concerned that people will not like it. I do research in this area, and some people think that means that I am trying to push for assisted dying. I am not; I have a neutral stance. I will say things pro; I will say things against. But it is quite difficult for people involved. There is a bit of a taboo—there is a secrecy. It makes it even harder to say in the Bill, “Recommend another doctor.” It will be a challenge to find that person.
Dr Richards: May I add something? The evidence suggests that one of the implementation challenges with assisted dying is finding doctors willing to participate—consciously participate—in this practice. However, I think what you are asking there is about a more Swiss model of assisted dying. There is a reason that the Swiss model of assisted dying has stayed in Switzerland and gone nowhere else—it has not transferred or translated to other jurisdictions, because of its uniqueness and the practical challenges of disentangling it from a healthcare system.
It is important to recognise that, but we are also talking a little about disentangling assisted dying from palliative care. It is important to recognise that the majority of people who request assisted dying—who receive assisted dying—are within palliative care. They are already in that, as I am sure you have heard already. To disentangle assisted dying from the specialist communication around end of life would seem to be a self-inflicted problem of design, in my view, because it is safest being held there by the experts for those who want to get involved in it. It is safest being held in the healthcare system. As I say, there is a reason why the Swiss model is the only model where that happens outside a healthcare system. That is localised to Switzerland.
Q
Claire Williams: Again, those safeguards would need to be in place. There would be concerns if they were not actually giving the drug to the patient, and seeing the patient take the medication. Yes, robust safeguards would need to be in place.
Q
Julie Thienpont: I am Julie Thienpont, and my husband and I were living in Spain at the time. My husband was diagnosed with mesothelioma and given three months left to live, so he opted for assisted dying. It was quite a rigorous process in Spain. It only came into law there in 2021, and he was one of the very first people in the south of Spain to take the opportunity of assisted dying.
Q
Liz Reed: As I said, my brother died in a hospice in Australia, where the hospices are extremely well funded, and the care he received was sensational. The team and the staff in that hospice made the time he had in there. Obviously, it was not amazing, because he was dying, but for a really difficult situation, it was comfortable for his family, and he had young children. You could not fault the care and access to the medication. We as a family, after he died, went back to the hospice to say, “This was changing for us and for him.”
But it did not change what was happening to my brother. He went from a hospital to a hospice, and he had a date planned for his death. He then actually changed his mind and extended it, because it was better than being in a hospital and the hospice care was great, but he still landed at the same point of saying, “This is not living.” It was not what he wanted, and not what he wanted. From a personal perspective, when he was diagnosed, we said, “You’ve got to come home.” But actually, I think, “Oh my God, what would have happened to him? How long would he have had to go on? How long would his children have had to watch him?” He was only 39 and his children were young, and they did not have to—they still remember their dad. For him, for his wife and for our family, I would not change anything.
Q
Pat Malone: In all three cases, it would have improved their lives and their deaths. My father died at the age of 85 from pancreatic cancer. He asked me to help him kill himself while he was in hospital in the last three or four weeks of his life. Obviously, I was not able to do so. He suggested that I put poison in his water, which I had no idea how to action. I spoke to his consultant and asked whether he could do anything to hasten his end, and he said, “No, no, no, I can’t.” After that, he lasted another three weeks and he had a horrendous death. It has scarred our family to this day.
My brother contracted the same disease, pancreatic cancer, and having seen my father die, he—having gone to six doctors and asked them whether they could help him end his life; he was under home hospice palliative care at that time—contrived his own suicide. Unfortunately, he asked his wife to sit and hold his hand while he died, as a result of which there was a police investigation into collusion. She and her daughter, who was also in the house at the time, were not cleared for eight months, during which they were interviewed repeatedly about anomalies and what they did or did not know. It was absolutely unconscionable to pile that on top of their grief, at a time when they had just lost their father and husband.
My sister’s death, having seen those two deaths, was much easier. She got motor neurone disease and was not really suffering in the way that my father and brother had been. She knew that her end was going to be as a live brain in a dead body, and that was the horror that she faced. From the beginning, she was fixed on going to Dignitas, which she did. It was not easy because, after the example of my brother’s family, she would not allow anybody in her family to have anything to do with the arrangements that she had to make, which were quite complicated and became ever more difficult for her. First, she could not drive a car any more and was going around on a mobility scooter, gathering endless documents and having all the tests that you need to have. Ultimately, she said, “This is my golden ticket.” When she was accepted by Dignitas, she said that it was the greatest relief of her life. She said, “I know I am not going to get cancer or dementia. I’m going to die painlessly at a time and place of my choosing.”
That is exactly what she did, but she died 1,000 miles from home. She should have died in her house with her family, and her dogs on the bed. She should not have been denied that. Had this Bill been enacted in her time, it would have been a much easier operation. The problem with this legislation mainly is that it is so long overdue. There are people now who are in that position. You may think our family is star crossed because we have had three deaths like that, but I think we are just a normal family. It is happening all the time. Chris Whitty talked on Monday about how we should not rush into this. We are not rushing into it; we are at the back of the queue, really.
In the interests of time, to allow everybody to ask their question, will Members indicate which of the panel members they would like to answer so that only one gives an answer? That allows everybody to get in.
Q
Dr Mulholland: That is something we have been thinking about carefully at the RCGP. Part of our normal discussion will often open it up for patients to lead discussions around their end of life. We see there could be potential restrictions for that clinical consultation with a gag order. We very much follow the opinion I heard from Dr Green from the British Medical Association earlier in the week. We go along with that.
We are very protective of our relationship as GPs, and want to give patients the options that they might want to choose for themselves. We are not usually pushing anyone to any decision, but supporting them through their end-of-life journey. We would want to protect that in whatever way, so we therefore feel that a service we can signpost to would be the most appropriate thing as the next step.
Dr Price: As a psychiatrist and as a representative of the psychiatric profession, it is noted in the Bill that mental disorder is a specific exclusion. It is very unlikely that a psychiatrist would suggest or bring up assisted dying in a conversation.
I think a concern allied to that is people with mental disorder who request assisted dying from their psychiatrist. It may be clear to all that they do not meet eligibility criteria for that, but it is not absolutely clear in the Bill, as it is written, to what extent a psychiatrist would have to comply with a wish for that person to progress to that first assessment. There is quite a lot involved in getting to that first official assessment, such as making a declaration and providing identification. A psychiatrist might therefore have to be involved to quite an extent in supporting that person to get there if that is their right and their wish, even though it may be clear to all that they do not meet eligibility criteria if that is the primary reason for their asking to end their life.
Q
Dr Price: If I take you to thinking about what an assessment of capacity would normally look like, if we think about clinical practice, a psychiatrist would normally get involved in an assessment of capacity if the decision maker was unclear about whether that person could make a decision. The psychiatrist’s role in that capacity assessment would be to look for the presence of mental disorder, and at whether mental disorder was likely to be impacting on that person’s decision making. They would advise the decision maker, and the decision maker would then have the clinical role of thinking about that information and assessing capacity with that in mind.
Psychiatrists sometimes assess capacity and make the determination, but it is usually about psychiatric intervention and issues that are within their area of clinical expertise, such as care and treatment, capacity assessment around the Mental Health Act 1983 and whether somebody is able to consent to their treatment. In the Bill, I am not absolutely clear whether the psychiatrist is considered to be a primary decision maker on whether somebody should be eligible based on capacity, or whether their role is to advise the decision maker, who would be the primary doctor or one of two doctors.
Should a psychiatrist be involved in every case? If there is a view that psychiatric disorders should be assessed for, and ideally diagnosed or ruled out, in every case, a psychiatrist might have a role. If they are seen as an expert support to the primary decision maker, that decision maker would need to decide whether a psychiatrist was needed in every case. We know from Oregon over the years that psychiatrists were involved very frequently at the beginning of the process, and now they are involved by request in around 3% of completed assisted dying cases. We do not have data on what the involvement is across all requests.
(3 weeks, 4 days ago)
Public Bill CommitteesOrder. We are going slightly off topic, so could we have a brief answer?
Glyn Berry: It would be something that is equitable for everybody. At this moment in time, it is not. As I say, some people get it and some people do not. A sustainable model would give fair access to everybody.
Q
Glyn Berry: We work very closely with clinicians and other health professionals. We talk about a multidisciplinary approach, because a person is not just two-dimensional; everything about their life needs the input of others in these situations. As social workers, our expertise and strength is in being able to ask difficult questions and really dig into people’s thoughts, feelings and opinions, giving them an opportunity to say things that sometimes they have never said in a whole lifetime. Other areas are around assessing capacity and giving people the option of knowing that there is not just one way of doing things.
I have worked in a hospice setting for the last six or seven years. I see daily how social workers contribute to the wider MD team in terms of safeguarding, capacity and applications for deprivation of liberty, but we also do the psychosocial aspect of palliative and end-of-life care. We sit and talk with patients, we do advance care planning and we deal with practical aspects such as supporting the arrangement of funerals. For families in which the parent or primary caregiver is the person who is ill, we will work with external statutory agencies like local authorities to give support where there may be children or vulnerable adults who are being cared for by the patient, to have provision put in place for after the death of the person. We also provide pre-bereavement support for both the patient and the family, and post-bereavement support for the family.
We have quite an extensive skills catalogue to support patients and families, but one of our biggest skills we have is in communication and in not being afraid to go where other professionals may feel uncomfortable going. Having conversations about people wishing to end their life is not a new thing: we have those conversations quite regularly.
Q
Glyn Berry: In our association, we have a list of recommendations. We are very conscious that the Bill is very heavy from a clinical perspective. There are a number of things. We do not feel that the decision and assessment should be all on the shoulders of a health professional, the clinician. Some clinicians are fantastic with assessing capacity and being aware of the safeguarding aspects of situations, but not all are, and we feel that our expertise lies in that particular area.
When we look at the overview of the process set out in the Bill, it is very, very clinical. Nowhere does it talk about the clinician exploring the other aspects of a person’s life; it is very much around the clinical aspect, and quite rightly so, because these are experienced clinicians. We feel that we should be involved in these decisions from the capacity and safeguarding aspect, but also in seeing whether there are things we can do to help the person make a more informed choice. If their decision to take their life is based on the fact that they do not have secure housing, that their benefits or finances are all over the place, that they do not want to be a burden on their friends or family, or indeed that they have nobody at all, those are areas that are very familiar to us in our daily practice. We therefore feel that we are well placed to support the clinicians in the whole process.
That was a really comprehensive answer. I think the key point that you touched on is the multidisciplinary approach.
Q
Professor Ranger: I think there is something really important about having a big difference in the beginning with regard to palliative care and assisted dying, and pain management. It is essential that those two things are slightly separated, because it would be heartbreaking to think that pain management was the primary reason that someone wanted to be assisted to die. We should be able to control and support someone’s symptoms and pain.
I think the primary thing with regard to being referred to another organisation is autonomy. I absolutely agree with what was said earlier: you would want anyone who is considering assisted dying to be slightly separated out of their normal clinical pathway, so it is not part of mainstream care for someone in a hospital or an organisation. There is something really important about separating that out, both in the discussions around the decision making and in any care involved in assisting them to die. I think those two things do need to be separated.
(3 weeks, 4 days ago)
Public Bill CommitteesI understand that, but address it through the Chair.
Dr Cox: Palliative care may well have improved in this country over those years when it also improved in other countries where assisted dying was not available. What we are saying is that there has been chronic underfunding of palliative care, so where we are now is inadequate.
Q
Dr Cox: I accept that there will be people even with a very good palliative care system who would still choose assisted dying. We do not currently have the very good palliative care system that we need. That is the thing that concerns me.
Q
Dr Cox: I will give you some examples. We need to make sure that the 75% to 90% of people who are dying and need palliative care are getting it. We need to make sure that there is not inequity in palliative care, so that you do not have to be white and rich and have cancer to get good palliative care. We need to make sure that hospitals have seven-day services. Seven-day-a-week cover is unavailable at 40% of hospitals. We need to make sure that communities have telephone advice services at night. One in three do not have any advice overnight for patients and their families to access. There are some concrete things that we could change to demonstrate that we are delivering a good service. But currently we are not.
Q
Dr Cox: I would love to see it continue. I am part of the commission on palliative and end of life care. There is no guarantee that the recommendations of that commission will be funded, and that is what concerns me. I would love to see that happen. Would it not be great if the two could happen simultaneously? But there is no guarantee that that will happen.
James Sanderson: I want to come in on your point and agree with Sarah’s points. Obviously, we welcomed the Government’s announcement of the additional funding for the hospice sector, but the Committee will be aware that the hospice sector currently receives only about 30% of its funding from statutory sources. We are therefore reliant on the good will of the population to raise money and support us in various ways, and through retail and other ventures that we have.
On the point about universality of service, we have in the Health and Care Act 2022 a requirement for integrated care boards to commission palliative care services that meet the needs of their population, but although there is guidance as to what that should look like, there is not universal take-up of that guidance and delivery of all of the stated services. Although that is outside the scope of this Bill, it comes back to the context of how much the overall position can be strengthened across the country. The context for anybody looking to make a decision is within the same space. As Dr Clarke said in respect of informed choice, if the context is the same for everybody, we can have more confidence that that informed choice is made at the right level.
Q
To go back to your point, Mr Sanderson, it is important to acknowledge the fantastic work that palliative care professionals do. Indeed, it is extremely important that we are having these conversations, which is why we gave extra time to this panel of witnesses.
Dr Cox, on your point about the pressure on the individual doctors involved in the process, the Bill is very clear that if they do not have the relevant specialism, they must refer to a specialist in that condition, and they “can” refer to a psychiatrist. There is probably consensus that we maybe need to strengthen the Bill in that regard. When there are doubts around capacity, doctors probably “must” refer to a psychiatrist. That is something I am taking away from these sessions.
I was interested in the comments about the multidisciplinary approach. We heard about that this morning from colleagues in social work and in nursing. I would love to know your thoughts, Dr Ahmedzai, about the idea of a multidisciplinary approach. I think there is a lot of value in that.
Dr Clarke, on this concept around training, it worries me that we have seen this afternoon a very different picture painted by you and others compared with what we heard this morning, when we had doctors and nurses telling us that they regularly assess for capacity and coercion. They said it is part of their day-to-day work and they were very confident in their ability to do that. Training is fundamental, and this is an opportunity to look at gold-standard training. I would be interested to know your thoughts on that.
Dr Ahmedzai: You asked me about the multidisciplinary nature of this. I am really glad you raised that, because we seem to be focusing on palliative care as being very professional, and I would remind people that there are levels of palliative care. A lot of palliative care is given not by specialists like the three of us here but by generalists—either GPs, as we have heard, or by oncologists or geriatricians. When we talk about increasing palliative care and improving palliative care, it is not just about more doctors like us working at a specialist level.
The other thing is that it is not just doctors. We have to acknowledge that nurses are on the frontline; they do so much more than doctors. When doctors clock off at 5 o’clock in those sad institutions that still do not provide 24/7 cover, there are nurses at the bedside all around the clock. Then, there are social workers, physiotherapists and others. If we are talking about meeting the needs of people who may not necessarily have pain but have other forms of suffering or worries, which are not even physical—the loss of dignity and the loss of independence—nurses are so good at supporting people in that. A doctor will just get in the way.
What we need to do is make sure that we are addressing the reasons why many people choose this. I know, from speaking to people abroad, that it is loss of dignity and loss of independence. Is that not a legitimate reason for wishing that you were not a burden on somebody, or on the state even? It is really important that we consider that.
The other thing to bring in as well, if we are thinking about the big picture, is another elephant in the room: palliative care is not strictly speaking actually in the NHS—not all of it. A lot of it is outside of the NHS, for historical reasons from 50 or 60 years ago when decisions were made. Although there are excellent charities providing discrete areas of it, we rely so much on non-NHS services. You would never think of going to a charity to get your heart transplant or your kidney dialysis. We need to confront the fact that palliative care is fractured because of that history and the genesis of how palliative care came to be. It is not just NHS. We must think about the multidisciplinarity.
Dr Clarke: Regarding training and how much it is required, I would not be the first person to make the observation that sometimes doctors can be very pleased with their own abilities at a particular practice, and that practice might be having a conversation where you are assessing someone’s capacity.
What is interesting as a palliative care specialist is that I and my team will be asked to get involved with patients in every possible bit of the hospital—surgical wards, medical wards, intensive care, emergency departments—so you actually see a huge number of patients being treated by many different teams and many different doctors, junior and senior, all of whom are having these difficult, nuanced conversations around the end of life with varying degrees of skill. Of course some doctors and nurses are superbly skilled at having them, and I would say that there are many who are not.
The reason training is so important is that it is a little bit like Donald Rumsfeld’s unknown unknowns. You might not even be aware of the fact that you have caused a patient or their family distress. In a conversation where fear is a dominant part—the patient is fearful of suffering misery and loss of dignity at the end of life, but they may not voice that—you as the doctor can be completely oblivious of the fact that you have sort of stamped over those unvoiced fears with your hobnail boots. You are not aware of it.
This idea that a vulnerable patient needs to be absolutely at the centre of any conversation you are having is quite radical in some parts of the NHS. It needs to be taught much more assertively from day one of medical school, so that vulnerable patients are always at the centre of the room. That is why I think the single most important thing for the Bill and its safety comes down to training and actually recognising that these conversations are difficult and nuanced. If we assume that, we are going to make sure that the Bill is as safe as it can be.
Q
Dr Spielvogel: People often feel that at the end of life, just in general. I think that conscientious people will often think about their family and how their situation is affecting their family and loved ones. That is something that many people go through, so that is something that comes up relatively frequently. It is usually embedded within a laundry list of reasons that people are looking for assisted dying. When people bring it up with me, it is more of a commentary on what they do not like about their dying processes—that they are also feeling like a burden on their family. That is a red flag for me, though: when I ask someone, “Why are you reaching for this?”, and they say, “Well, I am a burden to my family,” it is a red flag for me as a physician.
This goes back to the argument about capacity and coercion, because we are trained professionals who listen for these things. This is not a rubber-stamp evaluation. When we ask people why they are looking for this, we really want to assess their judgment and see what their reasoning is. If they are saying, “I’m suffering intolerably. I’ve tried all the things that palliative care and my regular physician are offered me, but I’m still suffering irrevocably. Also, there is this other piece: I see what this is doing to my family,” that is totally valid. That is something that any of my dying patients might say, whether or not they are seeking an assisted death.
If that is the only reason, that is going to lead me to ask a lot of probing questions. It would be a red flag for me, but it is incredibly rare that something like that would be the only reason. Dying is a very complex process, and people’s thought processes during their own dying are equally complex. There are a lot of things that people think about during that time.
Dr Kaan: I echo Dr Spielvogel. It is common that among the lists of things that people mention as reasons, they may mention not wanting to be a burden on their families or not wanting to put their families through an onerous and prolonged dying process. Obviously, if that is the only thing that they are mentioning, it will definitely get them further discussion and exploration into what is going on and what other resources we can point them to, such as connecting them with social workers and available community resources for helping with caregiving.
However, I hear most commonly that people’s desire to save their families from a prolonged dying process comes from lived experience, where they themselves went through the process with a loved one such as a mother or father: they were caregivers, sometimes for years, and felt that it was a burden on them, although they were happy to do so and it was loving. They have that lived experience and they are looking to save their family from what their experience was. I think it is common that people feel some element of that when they are in a situation where they require heavy caregiving.
I think it also goes back to autonomy. People who are in their right mind and have the capacity to make this decision should have the autonomy to have their reasons and their value systems respected, whether or not we share them or see it in the exact same way.
(1 month ago)
Public Bill CommitteesI want to talk about amendment (b). The right hon. Member for North West Hampshire said that all members of the Royal College of Psychiatrists are already members of the General Medical Council. But not everyone on the General Medical Council is doing the same job. Psychiatrists are experts whose day-to-day job is to manage people’s mental state, and deal with people with suicidal thoughts and depression. They are the experts.
I do not think that all members of the Royal College of Psychiatrists are for or against the Bill, so it would be reasonable to listen to those people who are experts in assessing people’s mental state and whether they are having suicidal thoughts—that is part of their job. I strongly support that part of the provision.
I want to touch on a few bits of language that have been used so far that just worry me slightly. When we talk about the value that experts can add to this process, it is not necessarily helpful for someone to try to say that some experts would be better than others in that regard. The phrase “best person” was used in one particular instance and there were comments about whether or not experts would add balance.
The list that has been collated has taken the lead sponsoring Member of the Bill a number of weeks and months to produce. Everyone had the opportunity to feed into that process over a period of time. And on balance, it is a list that captures a wide spread of views and different organisations.
During this sitting a number of points of order have been made to correct the record. In the spirit of the Second Reading debate on the Bill in the House of Commons, we need to try to make sure that we are mindful of any comment we make, so that we do not seem to try to say things that are not necessarily accurate.
The point that was made earlier about eight witnesses coming from foreign jurisdictions is important. My understanding of this whole process is that it is not about our trying to decide whether the Bill should go ahead or not; it is about trying to understand what would be workable. So, hearing from people in places that have already implemented assisted dying is far more useful than hearing from people in countries that have not done so. We have also heard from Members about which of those countries are more comparable to us.
It does not necessarily help us if someone takes us round in circles and talks about the point rather than trying to get on with the work. I fear that that is where we are at with these amendments. If we are now trying to rejig who will give evidence and at what time, that stops us from doing the important job of scrutinising the legislation and hearing from the expert witnesses that we want to call.
These amendments are not minor changes. Regarding the list that has already been collated, I know that it has taken a lot of time to establish when the witnesses on it are free and available to give evidence. I am not sure that those witnesses referred to in the amendment have the same level of availability in their diaries. So, on balance, we should proceed as the lead Member has been putting it, and putting it so well.
Sorry—may I just make my point?
I need to know the other side of the argument in order to make a balanced decision. Those who are opposed to the Bill might have very valid concerns, while those who have expertise in support of the Bill might not give me the same arguments. I want to hear a balance. At the moment, I think there is a real discrepancy between the number of people who are for and against the Bill; it is not very close.
I appreciate that my hon. Friend the Member for Spen Valley, the Bill’s promoter, really wants to get this legislation through Parliament. I also value how she has taken part in the debate and been amenable to having discussions both in Committee and in our offices. I have given my reasons for tabling the amendment, and I particularly want the Committee to accept amendment (b), on the Royal College of Psychiatrists; that is my top amendment.
Question put, That the amendment be made.