(1 year, 6 months ago)
Public Bill Committees
The Chair
I 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.
Tom Gordon (Harrogate and Knaresborough) (LD)
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.
Tom Gordon
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.
Tom Gordon
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.
Tom Gordon
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 year, 6 months ago)
Public Bill Committees
The Chair
I 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.
Tom Gordon (Harrogate and Knaresborough) (LD)
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.
Tom Gordon
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.
Tom Gordon
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.
Tom Gordon
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 year, 6 months ago)
Public Bill Committees
The Chair
Order. 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.
Tom Gordon (Harrogate and Knaresborough) (LD)
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.
Tom Gordon
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.
Tom Gordon
That was a really comprehensive answer. I think the key point that you touched on is the multidisciplinary approach.
Juliet Campbell (Broxtowe) (Lab)
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.
(1 year, 6 months ago)
Public Bill Committees
Sojan Joseph (Ashford) (Lab)
I 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.
Tom Gordon (Harrogate and Knaresborough) (LD)
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.