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

Bambos Charalambous Excerpts

Committee stage
Tuesday 28th January 2025 Public Bill Committees

[Kim Leadbeater]

Q That is incredibly helpful—thank you. Dr Kaan, do you want to add anything to that, and maybe touch on the training that takes place around identifying these things and the conversations that take place?

Dr Kaan: I echo exactly what Dr Spielvogel has said. As part of our medical training, we are trained to assess capacity in both small and big ways, depending on the size of the decision at hand, as he said. Throughout our medical training, we are trained to do that and to assess with a patient progressively over time, as we are seeing them in subsequent visits as well. This is really no different from that, although obviously the stakes are a bit higher than a blood pressure medication discussion.

We look at whether, for instance, the patient is able to voice a reason for making their decision. Do they have a logic behind it? Do they have a set of values that they can express? Is their decision consistent over time? We are looking at a longitudinal assessment, rather than just one fixed moment in time. Over the course of our assessments, it really does become clear in almost all cases that somebody either does or does not have the capacity to make this decision or any decision. This is really not outside the realm of what physicians are trained to do in any other case of medical decisions, especially large ones.

In the case of coercion, I agree that virtually all the time it is the opposite way: family members and loved ones are well-intentionedly trying to coerce or convince someone not to make this choice or not to proceed with this option, which they may have available, rather than pushing them to do it. I think the way to properly assess that is to ask open-ended questions: as Dr Spielvogel has said, to have them in the room alone, at least for a portion of the assessment, so you can have a one-on-one conversation; to ask the questions in various ways, so you are seeing the consistency of answers over time; and to look for non-verbal cues that may indicate that something else is going on. I have also never come across a case where I felt that a patient was being coerced into this decision by a family member, but rather the opposite.

[Bambos Charalambous (Southgate and Wood Green) (Lab)]

Q My question is about how the legislation is going and how you have implemented it. What changes have you made since it began? What teething problems did you find as you were going along? What adjustments have you made to your process?

Dr Spielvogel: The original version was called the End of Life Option Act. It legalised assisted dying in California when it went into effect in 2016. It was then amended in 2021, I believe; the effect of the main amendment was to shorten the waiting period. There was a 14-day mandatory waiting period between two verbal requests that a patient would give directly to their physician. What we found when we were studying it was that approximately 30% of people died during the waiting period.

There were many conversations with patients. The thought process behind the waiting period is that somebody is making a persistent, well-thought-out and non-capricious decision when they are asking for this, but there is a false premise there—[Interruption.]

--- Later in debate ---

[The Chair]

We were in the middle of your reply, Dr Spielvogel. Could you pick up where you left off?

Dr Spielvogel: I will make it brief. I was saying that it is an erroneous assumption that people start thinking about assisted dying the first day that they give their first verbal request. In reality, people have usually been thinking about it for weeks before that visit. Because of that, we did not see anyone’s decisions really ever change between the first verbal request and the second, 14 days later. That and the fact that 30% of people were dying during the waiting period led us to shorten the waiting period to 48 hours. That is the main change that we have had in our law since it was implemented.

[Bambos Charalambous]

May I put the same question to Dr Kaan?

Dr Kaan: You will know that throughout the United States there are a variety of aid in dying laws, all of them slightly different across jurisdictions. I practise in both the state of Oregon and the state of Washington, so I have to keep track of two slightly different laws.

In the state of Washington, where I am the medical director for End of Life Washington, we updated our law in 2023, mostly because we were trying to increase access to it for people who lived in rural communities or for people in underserved communities. Any healthcare system in the world right now has experienced a shortage of physicians, so the requirement for two physicians to do the certification was a barrier for people in those communities that did not have access to two physicians. One of the things we did to increase access in 2023 was to make it so that one of the two providers could be a non-physician: a physician assistant or a nurse practitioner with advanced training. One of the providers still needs to be a qualified physician, but that has increased access for those in rural communities and underserved communities. We are very proud of the fact that we have done that. Additionally, we shortened our waiting period for similar reasons, from 15 days down to seven days.

In Oregon, they shortened their waiting period. Well, they still have a 15-day waiting period, which has been stable since the start in 1997, but they also now have a provision whereby, if a patient is expected to die within those 15 days—if they are at the very end of their life and are not expected to be able to survive those 15 days—they can bypass the waiting period. I really like that provision, because there are patients who come very late in their process to this decision. It may not seem like much to us, who are healthy and relatively well, but 15 days for a dying person who is suffering and really wants this option is an incredibly long time.

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

Bambos Charalambous Excerpts

Committee stage
Wednesday 29th January 2025 Public Bill Committees

[Naz Shah]

Q Finally, to Dr Mullock, you have said that in all jurisdictions that have legalised assisted dying, the only meaningful gatekeeping is done by medical professionals. We only have retrospective monitoring that is primarily reliant on honest reporting, particularly discovering whether, or how frequently, coercion or flawed assessment has led to inappropriate assisted dying, and therefore challenging it, so it is impossible to know how many people have been sacrificed with lawful AD regimes. We have witnesses who have said there is no evidence of coercion, especially in examples in Australia and some US states where some assisted dying schemes have been implemented. When they say that, do you think they are being accurate?

Dr Mullock: I am sure they are being accurate in terms of the data before them. The problem is that it is difficult to know and, as Richard Robinson has pointed out, this is a hidden problem. 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.

[Bambos Charalambous (Southgate and Wood Green) (Lab)]

Q This is a question to Professor House. I know you are opposed to the Bill, but if it were to pass, what role do you see for psychiatrists in a multidisciplinary approach?

Professor House: It is a difficult question, isn’t it? I have already said that there is an element of assessment that is needed here—that is not currently acknowledged very much in the Bill—of somebody’s psychological state. I say “psychological state”, which has these elements to it, one of which is the presence of diagnosable mental disorder—the top of the list of importance is depression, which is well known, particularly in the elderly, not to be that easy. Older people do not express distress necessarily as openly and obviously as younger people do. There is an element of the psychological bit of assessment, which you could call psychiatric assessment, that attempts to identify and diagnose mental disorders, particularly depressive disorders. That is particularly difficult in the elderly because they are sometimes what is called “masked”. There is then the element, which is mentioned in the Bill, of the difficulty at times of judging somebody’s mental capacity. The trouble with the ideas of incapacity and coercion, both of which float around a lot, is that they suggest a very high threshold. There is this middle ground, which we have just been hearing about, with a degree of impairment of judgment, or bias in judgment because of what is going on. Those are the sorts of areas where you would want a mental health professional and probably a psychiatrist, but a psychiatrist with a particular interest in this sort of area.

[Rebecca Paul (Reigate) (Con)]

Q My question is to Dr Mullock. You talked in your written evidence to this Committee—and you have just touched upon it—about the danger that someone could bring undue influence to bear on a person considering assisted dying, and that influence could be, in your words, “more subtle than outright coercion”. How do you think the Bill could be amended to avoid that danger?

Dr Mullock: I suggested in my written evidence that throughout the Bill, where it says that the person has a

“clear, settled and informed wish”,

you could add that the wish should be “clear, settled and autonomous”. Also, on whether the person has made the declaration voluntarily, it says that they must not have been “coerced or pressured”. You could add that they must not have been “encouraged, coerced or pressured”.

--- Later in debate ---

[Rebecca Paul]

Q I have a quick follow-up. What you said about palliative staff generally being against assisted dying was very interesting. Briefly, what are the drivers or key reasons for that?

Toby Porter: I am conscious that two palliative care doctors are sitting to my left, but I would say that it is quite constitutional. The World Health Organisation definition of palliative care talks about neither hastening nor prolonging death. There tend to be very strong feelings about that, but others might be better placed to answer.

Dr Hussain: I would echo what Sarah Cox said yesterday. For the vast majority, it is the worry about how it impacts all those other people. In principle, the majority of people I have spoken to—we see the patients who want it and would benefit. It is everyone else and the Pandora’s box of risk we are opening that is mainly our worry.

Dr Neerkin: People are worried that palliative care is going to lose funding based on this—that is one aspect. There was an interesting article in The Lancet last month by my colleague Libby Sallnow about the risks. Palliative care in the UK is gold standard relative to the rest of the world. If we start to change what we are doing here—introduce assisted dying and say that that is potentially a preference—that may therefore be replicated elsewhere without implementing palliative care. Those are some of the worries that people have, but that is not to say that, individually, people are not supportive.

[Bambos Charalambous]

Q Following on from what Mr Porter said about the provision of hospices, we are blessed with some wonderful hospices in north London that provide fantastic facilities. I agree with Mr Royston about the need for an assessment of palliative care funding right now; that is important. The fact about the funding is quite shocking. One of the local hospices has something that has been nicknamed a “death café”, where people get to discuss the end of life in a setting with friends and family members. On the issue of ethnic minorities not accessing services, what are your thoughts on being able to have settings where they can discuss different options at the end of care, get the support they need and make properly informed choices about the end of life? That question is to the whole panel.

[The Chair]

Order. I repeat that we have about 15 minutes left and four people left to ask questions, plus the previous question. Could hon. Members appoint who might answer the question? I do not want to cut off witnesses right at the end; it would be rude to do so. Who wants to take that question?

Dr Hussain: I will take that one. As I have said, in Bradford I have been going into the communities and meeting them in community groups where they already meet—it is their safe space. Over the last three to four years, we have done a series of workshops just opening it up: “What is death and dying like for you?” We have done that with the Pakistani women’s group in particular. We have recently moved on to go, “What stuff do you want to know about?” We had a series of four workshops where they could choose anything, so they talked about stuff such as religion and what services are available—none of them knew what services we had, which is shocking. But the workshop that they all voted for the most—and it was packed—was on benefits. These women are structurally so disadvantaged; they were asking about pensions and so we had benefits advisers come in. The women asked, “Please could we set this up monthly, for you to come speak to us and inform us?”, but it was a “No, we don’t have capacity.”

I have been asking for these workshops to be scaled up across Bradford. What do I get told? That it is not the hospices’ role, not the hospital’s, not the integrated care board’s. I have gone and presented my data and the feasibility with “This is how we can do it, this works really well”, but everyone says it is not their job. That is why I think the public health approach going into communities requires a completely different approach—it needs people who are seen as trustworthy and it requires us to be trustworthy, that is, we go in there, genuinely listen, and do stuff about the stuff talked about. I have done it and that is where the trust comes from.

It requires core funding, and the hospices cannot stretch to that—that is a huge issue. I have done it with a few groups, and to do that at scale in a place like Bradford—it absolutely has all the assets to do this—the funding has to happen. That is absolutely needed. We need to have that reciprocity, genuinely going in there and saying, “We’re here to hear, and we will act on that.”

Sam Royston: I agree with everything Jamilla says, as always. There are two connected issues here. One is about better whole-community conversations about death and dying, and death cafés are a fantastic example of that. I also think, incidentally, we need much better conversations about death, dying and bereavement in schools. We have worked recently with a number of other charities on getting bereavement education on the national curriculum, which I think would be a fantastic step forward. We need better whole-society conversations about death, dying and bereavement.

However, there is another conversation, which is about practical discussions about people’s preferences at the end of life—advance care planning conversations. We need to get much better at them—better at them happening and particularly better at them being acted on. We did a survey recently on why people do not have those conversations about their cares and wishes for their end-of-life preferences, and the key reason people said they did not have them was because they felt they would not be acted on. So we need to make sure that we are thinking about—and this includes ensuring access to palliative care support—how to enable those conversations, when they happen, to be acted on.

We also, incidentally—this is a bit of a technical point—need to make sure that those preferences are shared across services. There is very poor data sharing at the moment; ambulance services and the hospice needs to have that, and the GP and hospital need to know what people’s preferences are. We need to make sure that everyone involved in the care of that person is able to respond to those preferences.

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

Bambos Charalambous Excerpts

Committee stage
Thursday 30th January 2025 Public Bill Committees

[Naz Shah (Bradford West) (Lab)]

Q Professor Owen, yesterday Professor Allan House gave evidence and talked about capacity and coercion, and I want to pick up on some of the concerns. In all four of the jurisdictions that collect data on the issue—Oregon, Canada, Western Australia and Washington—between 35% and 59% of people cite being a burden as a reason for assisted dying. What do you think is the level of confidence of psychiatrists to assess capacity and consent reliably? What would your concerns be, if any?

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.

[Bambos Charalambous (Southgate and Wood Green) (Lab)]

Q Dr Ward and Professor Hoyano, we heard yesterday evidence about the interplay between assisted dying, the Equality Act 2010 and the European convention on human rights. Should amendments be made to the Bill to deal with those issues? What are your thoughts about the interaction between those pieces of legislation and the Bill?

Dr Ward: I heard the session yesterday and would agree with the comments that were made there, particularly around proportionality. Article 2 is an absolute right —the right to life—whereas article 8 is a qualified right. Again, it is about that balancing act. The courts have been very clear that we need to protect vulnerable people, and I feel strongly that the Bill straddles that very well by giving choice but in a very limited set of circumstances.

On the Equality Act, there have been some claims made—this happened in Scotland—that the definition of disability in the Equality Act would cover people who are terminally ill. That that is not my reading of it, and that position is widely shared by the people advising us in Scotland on the legal capacity. That is all I have to say.

Professor Hoyano: I would only point out to the Committee that the common law entrenched the human rights of the patient a long time before the Human Rights Act 1998. We must remember that we do not just have to look at the European convention and Strasbourg. The common law has been very active in entrenching fundamental principles of the rights of the patient, particularly their autonomy in decision making regarding their own body, since long before the HRA.

[The Chair]

Time allows us to ask more questions. Three people have indicated that they wish to come in. I will start with Danny Kruger.

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

Bambos Charalambous Excerpts

Committee stage
Tuesday 11th February 2025 Public Bill Committees

[Danny Kruger]

It is a great pleasure to follow the hon. Member for Bexleyheath and Crayford, and I pay tribute to his powerful speech. I wish more people on our side of the debate and on the Committee had medical backgrounds, but I am glad that we have someone who has such direct personal experience of supporting people with learning disabilities. I am grateful to the hon. Gentleman for everything he said and I entirely agree with it.

I want to speak in support of new clause 1, tabled by the hon. Member for Richmond Park, to replace the use of the Mental Capacity Act with a new ability test. This goes to the heart of the Bill: it is absolutely crucial. Clause 3, which her new clause would replace, is in a sense the essence of the Bill. It is the shortest clause, but perhaps the most important one, because it determines the means by which somebody will be assessed to be capable of making this decision. It is a very important protection—and, at its simplest, this is a very confusing and complicated area. I will no doubt confuse myself in the course of my speech, but I have a simple observation to make, which the hon. Lady also made very well. We are dealing with the issue of impaired judgment; currently, under the Mental Capacity Act, it will be possible, through the terms of this Bill, for somebody whose judgment is impaired by virtue of a mental disability or mental illness to successfully apply for an assisted death. I do not think that is what the public want and I do not think it is what the House of Commons voted for. I think it is a misunderstanding of the principle of the Bill, which did win support on Second Reading.

The simple fact is that somebody’s judgment can be impaired under the Mental Capacity Act, but they could still have capacity. We have repeatedly heard points made about how the Mental Capacity Act applies in the normal conduct of life for disabled people—for people with mental disabilities. For instance, people can be anorexic, depressed or suicidal, and of course they can still consent to all sorts of decisions that affect their life, including medical treatments. A person can consent to have surgery on a broken leg while depressed; there is no difficulty whatever with that and of course that is appropriate. That is rightly the basis on which we currently judge capacity.

New clause 1 would build on the terms of the Mental Capacity Act. It would add to the principles of autonomy and of people being able to understand, use and weigh the relevant information. As I said in an intervention, the key point is that using this new test of ability would ensure that the person was fully able to do those things—fully able to understand, use and weigh the relevant information. In the case of impaired ability, they would not be considered to pass the test.

We hear a lot that this is the toughest Bill in the world, with the highest safeguards. It is worth pointing out that in Oregon, which this Bill is largely inspired by, there is an impaired judgment test. There is a capacity test similar to that in the Mental Capacity Act, but people are also required to demonstrate that there is no impaired judgment, and that is exactly what the hon. Lady is seeking to achieve. Her new clause would build on the terms of the Mental Capacity Act with these key principles about understanding information, but would ensure that it was a full understanding, with no impairment. It would strengthen the Bill without complicating it. In fact, it would significantly simplify it, because at the moment—this is the substantial issue with the application of the Mental Capacity Act—a huge complication is involved when we go into the forest of the MCA and try to apply it in these terms. When we try to navigate our way through the MCA in pursuit of an assisted dying application, there is a whole series of complications.

I will cite some of the evidence that we received. The Royal College of Psychiatrists, which we heard from, stated in its written evidence:

“It is the RCPsych’s view that the MCA is not sufficient for the purposes of this Bill.”

We also had evidence from King’s College London’s Complex Life and Death Decisions group, which is a group of world-leading professionals working on issues relating to the end of life. They say that use of the MCA for assisted suicide would be “an entirely novel test”. I note that the hon. Member for Penistone and Stocksbridge—and I think my hon. Friend the Member for Solihull West and Shirley—made the point that an “ability” test would be a novel term. I acknowledge that the term “ability” is not currently set out or recognised in law in the same way that capacity is, but as I said, it is clearly defined in new clause 1, as tabled by the hon. Member for Richmond Park. Of course it is going to be novel—we are talking about something that is entirely novel. Assisted suicide is a new measure that is being introduced, so of course we have to have a new measure by which we define who is appropriate.

[Bambos Charalambous (Southgate and Wood Green) (Lab)]

I am reading the text of new clause 1, and it is remarkably similar to the text of section 3(1) of the Mental Capacity Act, which says,

“For the purposes of section 2, a person is unable to make a decision for himself if he is unable—

to understand the information relevant to the decision,

to retain that information,

to use or weigh that information as part of the process of making the decision”.

It is not a novel concept—that wording is virtually the same as in new clause 1. I do not see why we need to have the new clause or the new definition, as it is already present in the Mental Capacity Act.

[Danny Kruger]

The hon. Gentleman’s intervention helps me to explain my point more clearly, which is that the new clause tabled by the hon. Member for Richmond Park builds on the terms of the Mental Capacity Act. It recognises the value of the terms, which have been well established in case law through the MCA—the ability to understand, use and weigh the relevant information.

The key difference is the word “fully”. The case law around the MCA allows for somebody to be deemed capacitous even though their judgment might be impaired. What is proposed in the new clause is the closing of that lacuna, so that it would not be possible for someone to get an assisted death if their judgment was impaired. That is the key difference.

It is also important to exclude the MCA because of the thicket of complications that it would entail. We have heard about the importance of simplification. A much simpler and better way to do the entirely novel thing that we are proposing, which is to authorise assisted suicide by the state, is to have a new definition.