Terminally Ill Adults (End of Life) Bill (Second sitting)
Tuesday 28th January 2025
(2 days, 14 hours ago)
Public Bill CommitteesTerminally Ill Adults (End of Life) Bill 2024-26 View all Terminally Ill Adults (End of Life) Bill 2024-26 Debates Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: Public Bill Committee Amendments as at 28 January 2025 - (28 Jan 2025)
The Chair
We are now sitting in public and the proceedings are being broadcast. Before we begin, I remind Members to switch electronic devices off or to silent. Tea and coffee are not allowed during sittings. Before we start hearing from the witnesses, do any Members wish to make declarations of interest in connection with the Bill? No.
We will now hear oral evidence from Professor Sir Chris Whitty, chief medical officer for England, and Duncan Barton, chief nursing officer for England, NHS England. Before calling the first Member to ask a question, I remind Members that questions should be limited to matters within the scope of the Bill. I also remind Members that time is tight, so please keep your questions to the point. We must stick to the timings in the sittings resolution that the Committee has already agreed. For this session, we have until 10.05 am. Will the witnesses please briefly introduce themselves for the record? If you are to give an opening statement, please keep it short.
Professor Whitty: I am Chris Whitty, the chief medical officer for England, and I am also representing the chief medical officer for Wales. One statement, which is on behalf of Duncan and myself, and all the CMOs, is that we are completely neutral on the principles of the Bill, which we consider are entirely for society and therefore for Parliament. Although we are answering technical questions, we will not be answering questions of principle, because we feel that is a societal question. We have made it clear to the medical profession, however, that individual doctors should be able to make whatever statements they wish. Obviously, doctors have strong views on all sides of this argument, as members of society do.
Duncan Burton: Good morning. I am Duncan Burton, the chief nursing officer for England. For transparency, I will say that I am also a volunteer trustee of a hospice.
Naz Shah (Bradford West) (Lab)
Q
“But if any provision of this Act has not been fully brought into force before the end of the period of 2 years beginning with the day on which this Act is passed, that provision (so far as not already in force) comes into force at the end of that period.”
My question is: do you believe that it would be safe to implement this legislation if those provisions had not been fully put in place?
Professor Whitty: If this Bill is passed—I want to stress that; I will say it once, but assume it applies for all the answers I subsequently give—we will clearly need both: a period to make sure that there is technical guidance and legislation, via secondary legislation, because obviously the primary legislation is the Bill; and necessary training for people to be able to do this in an appropriate and dignified way, if that is what Parliament chooses.
Naz Shah
Q
Professor Whitty: That is an absolutely critical question, because it is very important that if the Bill is passed, all parts of society, of whatever ethnicity and of whatever background, have equal access to the Bill—or not, as Parliament determines. That will require adjustment in a variety of ways. Some can be done at a macro level—for example, making sure that everything is translated into the major languages spoken in the United Kingdom—but a lot of it will be to do with the individual interactions that doctors, nurses and other healthcare providers have with individual patients, which must take into account their own starting point, their own knowledge and, most importantly, their own beliefs.
Lewis Atkinson (Sunderland Central) (Lab)
Q
Professor Whitty: I will give my view, and it might be useful to get Duncan’s view on the nursing side, because nurses will often be heavily involved in these discussions.
I would divide the kind of training that is needed into two broad groups: training that is essentially normal medical practice but may need some variation, and things that are clearly specific to this Bill. Issues, for example, around mental capacity—as determined by the Mental Capacity Act 2005—are dealt with every day, in every hospital up and down the country; every doctor and nurse above a certain level of seniority should be able to do that normally. It may require some slight adjustment. There is an absolute expectation within the Act, for example, that the more serious the decision, the greater the level of capacity that someone needs to have. That is already built into the principles of the Act and the way that things are done. I would extend that to the management of end of life, which should be a normal part of medical and nursing practice—we will all die eventually, and that has always been part of medicine, and always should be. That training should be generic, but may need some adaption.
There will then be some specific things that will be necessary for people to understand the legislation, including, in some cases—if this Bill is passed—if they are to take part in the final part of prescribing drugs to patients. It is much more likely that a very large number of doctors and nurses may get involved in the very earliest stages, because someone may raise an issue with their GP, nurse or consultant, who will need to have the basic understanding for that. In my view, the more detailed later stages will require some specific training. I think there will be a gradation of doctors: those who are happy to have the general, initial conversation; those who are happy to have the structured conversation that follows; and a minority who will be happy to go on to take part in the final stages.
It is very important that the wishes of the patient are respected. That is the central point of this. We must start with what is good for someone in their last six months of life, and for their immediate family, but we must also make sure that the wishes of healthcare professionals around this area are absolutely protected, when it comes to conscience and to choice.
Duncan Burton: I am mindful that there are two groups of staff who would potentially be working in this service, if the Bill is passed, but also of the wider workforce. At 2 o’clock in the morning, when a patient wants to have a conversation with somebody about end of life, it is going to be a nurse with them, or a nurse in a care home, or a specialist nurse providing cancer care, so we have to think about the training and support that is required for them, be that around signposting or explaining where they can go to access more information. There is an important part about the entire wider workforce that we need to think about.
Clearly, for those people who are working in such a service, we need to think about the safeguarding elements, and how we make sure there is support through safeguarding training and confidentiality—particularly mindful that some patients may choose not to tell their families about this. We need to think about how we enable and support staff in managing those kinds of circumstances and navigating the legal requirements through the Bill. We need to think ahead about what we need to do in undergraduate training for doctors and nurses, and in the curriculum.
Lewis Atkinson
Q
Professor Whitty: You are absolutely right: it is a completely normal part of medical and wider nursing, and other practice, but particularly medical practice, to consider issues of consent and capacity. It can be that someone says they do not want treatment that is clearly going to be lifesaving. A very well-known example is that of Jehovah’s Witnesses, who choose not to have blood products. If they are bleeding heavily, that is an issue that could lead to the end of their life. Provided they understand that and they have capacity, that has to be respected.
The alternative way—the other thing that doctors have to do—is to give people advice before they have major operations, chemotherapy or other drugs that may in themselves lead to the end of their life, but which also may lead to a benefit. Explaining to people the risks and benefits, including the fact that they may lose their life as a result of the next stage—if someone is at high anaesthetic risk, that is not a trivial risk sometimes with operations—is a very standard part of medical practice that you do from the point that you qualify. Obviously, as people get more senior, they tend to be more experienced in it—and, as with most things, if you get more experience, you generally get better at it.
Sarah Olney (Richmond Park) (LD)
Q
Professor Whitty: If I am honest, I think it would be extremely difficult. If I may, I will explain why, because it is a really important question. Let us take cancer. For the great majority of people with the majority of cancers that are diagnosed tomorrow, the doctor who is seeing them will say, in all confidence, “You have cancer and I expect you to be alive not just next Christmas, but for many years to come.” The fact that they have cancer is not in itself a demonstration that they are going to die. In fact, the majority will not. Almost 80% of people with breast cancer diagnosed tomorrow will still be alive 10 years later, for example.
Equally, there are people who may not have a single disease that is going to lead to the path to death, but they have multiple diseases interacting, so they are highly frail; it is therefore not the one disease that is the cause, but the constellation that is clearly leading them on a path inexorably to a death at some point in the foreseeable future. Exact timings are tricky—we might want to come back to that. I therefore think it is quite difficult to specify that certain diseases are going to cause death and others are not, because in both directions that could be misleading.
Sarah Olney
Q
Professor Whitty: At the extremes —most people are at the extremes—it is very clear what is going to happen. For most people, you can say with confidence, barring some extraordinary accident like being hit by a car on the way out, “You’ll be fine in a year, even though you have heart disease, cancer or whatever.” At the other extreme, there are people who are clearly dying and will die in the next two or three days, and virtually nothing will change that reality.
What we are talking about in the Bill, of course, is a point between those stages, but people will definitely reach a point where there will be an inexorable and, importantly for the Bill, unreversible slide towards a point of death. People can make a reasonable central view, if they are experienced in a particular disease, about when the death is likely to happen, accepting that there is a spread around that. I am sure that the general public and Members of Parliament fully accept that this is not a precise science. This is a central view, and there is a big academic literature around this. Some people will die significantly earlier than they are predicted to; a small number will die very significantly later; and some people will certainly die a bit later or to some degree later. The central view is usually reasonably accurate—that someone is now on a pathway from which there is not going to be a return.
Kim Leadbeater (Spen Valley) (Lab)
Q
Professor Whitty: Duncan, why don’t you take the first bit and I will take the second?
Duncan Burton: In terms of looking for signs of coercion, all of our nursing and clinical staff have safeguarding training, which already looks at things like whether people are under financial coercion or other forms of abuse. That training is already in place and it is extensive across the NHS and social care. If the Bill is passed, we will need to look at how we strengthen that training in relation to spotting the potential signs of coercion in this space as well. Given that that mechanism is already in place, I think that would be an extension, so it is important that we factor that in. I am also mindful, given the scale of colleagues we have working across health and care, that the time between the Bill being passed and its implementation is sufficient that we enable everybody to receive that additional training, if it is required.
Professor Whitty: In terms of strengthening the Bill, as a practitioner, I was relieved that the decision was for the Bill—if it stays this way—to stick with the Mental Capacity Act, and that was for two reasons. First, that Act is used up and down the country by doctors and nurses every day; they know it and they understand it. Although, as you say, it is a large piece of legislation, it is one that people have worked through in practice multiple times. If you ask six or seven doctors, “Does this person have capacity?”, in almost all cases you will get six or seven identical answers, because people are used to using it.
It additionally has the advantage of being tested in the courts. That has gone as far as the Supreme Court, and the various ambiguities that were inevitably in the legislation have been clarified by senior judges. Therefore, to practitioners like me, it feels like a piece of robust and predictable legislation. Within the legislation, it is very important that there are some situations where you will need to call for additional assistance. For example, if someone has a co-existing mental health condition, you will probably want to ask a psychiatrist additionally whether that condition is interfering with the decision taken to the point that someone loses capacity for this very important decision. The level of capacity has to be reasonably high.
My own view is that starting this way is the sensible thing to do. That does not mean there could not be arguments for some additional points, but I cannot immediately—again, as a jobbing doctor—see ones where I think, “This is going to make a big difference.” The fact is that this is founded on a very established bit of well-used and well-recognised legislation.
Kim Leadbeater
Q
Professor Whitty: The further you go up in the seriousness of the decision, the more you would do that. For example, if you were setting a finger that had been broken, you are not going to wait until a psychiatrist has said that you can do that. Within reason, provided that someone gives consent, you will do that. You will be much more cautious about moving forward with things like open heart surgery or deprivation of liberty if you think there is uncertainty. It should be clear. For the majority of people, it is very clear they have capacity or very clear they do not. There is a relatively small—but important—number in the middle where that is less clear and where additional views are relevant, particularly where there is a question of co-existing mental health issues. The fact of the mental health condition does not in itself mean that someone does not have capacity, but what has to be taken into account is, “Do they have the capacity for this decision at this point in time?” That is how the Mental Capacity Act works.
Rebecca Paul (Reigate) (Con)
Q
Professor Whitty: As we have seen in covid, the NHS, like any service, can swing very fast if there is a need for speed. In this case, I think most people in society would say that the key thing is to get this right. Personally, I would rather it was not running against a timeline. You would not want it to drag on forever, because then you have uncertainty for everybody, but I think Duncan and I would both say that two years seems a reasonable starting point. With some things, it might take longer than that to work out how we are going to provide this in the most safe and equitable way—for example, in dealing with minority and other groups. We need to get all that right and, at least at first pass, get it as close to good as we possibly can.
Equally, we may find when we first start using the legislation that there are some things that we had not considered at the beginning, and therefore we need to go back and improve on them because we just had not thought about them in the first way through the gates; that is why I hope that some of the more operational issues are done through secondary legislation and regulation. Inevitably, that is true for many bits of legislation, but it is particularly important here.
I go back to my very first comment: the central person here is an average citizen in their last six months of life. What we do not want is a system very difficult for them to navigate so that they spend their entire last six months of life—if the Bill is passed and they choose to take account of it; they are going to be a minority—stuck in a bureaucratic thicket. We need to keep this simple. My view is that the best safeguards are simple safeguards. Overcomplicating usually makes the safeguard less certain.
Rebecca Paul
Q
Professor Whitty: I think that there is a big difference between the Act coming into initial force—that is, “This is now where the law is”—and the service being provided. On the second of those, I would argue against putting a firm deadline, with a reasonable expectation that the NHS and others should be involved in trying to make plans for this as fast as possible. But if the Bill is passed, we are going to have to sort out multiple different things to get this to work. If we were three months away from being able to get something sorted out, I would not want to have a situation where it all had to start the following day. I think that would make it much harder to provide a safe, fair and secure service.
Duncan Burton: In my understanding, the Bill does not call out the NHS specifically in terms of providing this service. A number of steps would have to be gone through to understand the implications—the operational and training implications, as we have already discussed—to understand the timeline required. For the reasons Chris has outlined and as mentioned earlier, when thinking about the wider implications for the workforce there would need to be sufficient time to be able to work through those.
Rebecca Paul
Q
Professor Whitty: That is a key question, and to me that does seem something that Parliament may want to debate. That is not a question for us, but it is a point of principle one way or the other.
Liz Saville Roberts (Dwyfor Meirionnydd) (PC)
Q
Professor Whitty: First, I have had quite a lot of conversations—not just with the chief medical officer for Wales, but all the other chief medical officers and indeed a much wider range of the medical profession; I wanted to feel that I was giving a central view of the medical profession in terms of the practicalities. My view is that, in a sense, the principles of the Bill are no different between England, Scotland, Wales and Northern Ireland, although the legislation would apply only to England and Wales were it to be passed.
The operational questions we have been talking about will be either subtly or importantly different between the different jurisdictions for a variety of different reasons. I do not think that is a problem, provided it is in secondary legislation and it allows the different jurisdictions to do things in the way that best suits their own set-up. Again, as we saw during covid, different nations will choose to reach the same end state using slightly different practical routes.
Liz Saville Roberts
Q
Professor Whitty: Yes. I think in principle it would be better to be as close as possible, but if there were important practical differences why it was not going to start on the same date, the more important thing would be to get it right rather than to get simultaneous timings.
Daniel Francis (Bexleyheath and Crayford) (Lab)
Q
I also heard what you said about the scaling of decision making, but within the Bill, in some of those scenarios there is no mandating; the word “may” is used rather than “must”. I want to understand your viewpoint on whether it would provide stronger safeguards if those parts of the Bill were tightened to include “must” rather than “may”, and if the reference to capacity were replaced with a separate definition of “ability”, as proposed in our amendments.
Professor Whitty: I am probably not the best person to ask about the exact drafting of the Bill in terms of “may” and “must”, but I can answer the second part of your question, which is really important.
If there were no Mental Capacity Act, there would be an argument, which has been used for a long time, that the Bill would have to define what was meant with a fair degree of clarity. It would not be able to do that with just one clause; there would have to be quite a lot of clauses, if I am honest. All systems of this sort are going to be imperfect. The reason why I think it is sensible to base yourself on the Mental Capacity Act is that it is well used and well understood in practice by practitioners every day. Having a system with two completely separate groups of assessment, one of which has never been tested in the courts or used outwith this Bill, would lead to a whole set of potential complications and ambiguities, which are not there at the moment because we have a well-tested mechanism through the Mental Capacity Act.
People should move away from the Mental Capacity Act with some caution, because I think that will cause as many problems as it solves. It is not clear to me what problem people are trying to solve by doing that, given that the Mental Capacity Act clearly makes the point that the more severe the decision, the greater the degree of capacity that has to be assumed before people can actually take that decision. That is the foundation of some of the disquiet that people have had, but it is central to how the Mental Capacity Act works in practice.
Dr Simon Opher (Stroud) (Lab)
Q
“reasonably be expected within 6 months.”
Is that in line with your thoughts on the matter?
Professor Whitty: I think that is a reasonable point in time provided that, in taking that period into account, Parliament assumes that we mean a central view that this is six months, although it might be before that and it might be after. Other times would be equally reasonable, but if you are going to choose one, then six months is reasonable. It is generally very predictable that someone is going to die in the foreseeable future, but predicting whether that will be in five months or seven months is a lot harder, and there would be some caution.
Notably, in the countries that have chosen to go down an assisted dying route—a variety of different ones have been chosen—a significant minority of people die before they actually get to the point where that occurs because there is uncertainty in both directions. I think that period is as good as any other, but I want people to be clear that this is not an exact science where you can say, for example, “On 20 August.” It is not as tight as saying that a baby is going be born on a certain date. It has a wider spread of uncertainty around it. In the overwhelming majority of cases, that does not mean that it will go on for months or years longer, but there will be some degree of uncertainty.
Dr Opher
Q
Professor Whitty: Duncan may wish to comment for nurses. For doctors, we should be very mindful of the fact that for some doctors, as for some citizens, this is a point of very strong principle indeed, therefore there will be a gradation of people feeling that they can personally be involved in it. I suspect that if they themselves did not feel able to do it—because of conscience or choice, or because they did not feel that they had the necessary skills—the great majority would have no problem referring on, but it might be an issue for some people.
Personally, my view is that we should be able to have the range, provided that people are aware in general that, if one person cannot provide it and then does not wish to discuss it, there are alternative routes. But that really is a matter for Parliament and if Parliament says, “No, actually, that is unfair on the patient, because then the patient is having to go through an extra step,” that is an alternative and perfectly reasonable principle. Parliament is going to have to balance those two principles; that is not for me as a doctor. I just think that that range of opinion needs to be thought through when people are coming to that final parliamentary decision.
Duncan Burton: If I could add to that, again, I think that bit about the wider workforce and how we would support them is really important. We have situations like this already. We have advice professionally around things such as abortions and working in embryo services and fertility, for example, so we need to make sure that the safeguards for our staff are really clear. As Chris has said, our staff will have a range of views and opinions on this, as will the wider public. So the work you do in creating this Bill is really important in terms of the advice that we give to people about signposting and having those conversations. Actually, our clinicians are having conversations every single day about the choices that people have at the end of their lives.
Sojan Joseph (Ashford) (Lab)
Q
Professor Whitty: I would hope that most doctors are capable of identifying that someone has some degree—or a large degree—of mental health distress, or mental health illness, if you wish. What not all doctors will feel comfortable doing is actually deciding whether that is sufficient to interfere with someone’s ability to make a decision with full capacity. That is where help from colleagues from psychiatry, and mental health more widely, is going to be useful.
But that should be good medical practice, in my view, under all circumstances. This Bill takes it to a high level of need because of the seriousness of the decisions being taken, but that is part of medical practice. Duncan will have discussed with senior nurses, when he when he was operating clinically, “Should we actually get an opinion from a mental health colleague”—either a community psychiatric nurse, if it is that kind of question, a psychiatrist or others—“to make that assessment?”
That is really the question, but I certainly would not want to be in a situation where the fact that someone with a terminal diagnosis will have some degree of low mood in itself just rules them out from any kind of medical intervention—this, or any other. That should not be the case. They have to have access to whatever the state and the medical profession are able to provide—again, obviously, depending on what Parliament decides on this particular Bill.
Sojan Joseph
Q
Duncan Burton: I think you are absolutely right—anybody working in stressful environments. If the Bill is passed, we will need to make sure that we have sufficient psychological support for nurses and doctors working in these services, as we do now for many of our nurses and other professionals working in these kinds of situations. People working in end of life, or cancer nurses, for example, often have psychological support to help them deal with some very difficult conversations with patients.
We would need to look at that and make sure that sufficient support was in place for anybody working in these situations. We would also need to be mindful about the wider workforce, given the issues from such a debate as this and how the decisions to signpost people on to services might create—for some people—moral injury. We do need to think about the support in place for those people.
Jake Richards (Rother Valley) (Lab)
Q
Professor Whitty: It is entirely a matter for Parliament, at one level, but I can give a view. It goes back to the point that Naz Shah and others made earlier: the situations that people find themselves in are extraordinarily different—culturally, where they are in their lives, where their families are and a whole variety of other issues. Only the clinicians dealing with that person will really know all the different factors at play. If there is a good therapeutic relationship, and you would certainly hope there was, they should understand a whole variety of things that are very difficult for people sitting around this table to predict, however wise you are—although I am sure you are extraordinarily wise, to be clear. That was not my point. My point is that this is very difficult and I could not, at this point, write down a law that would be helpful to someone dealing with a whole range of different scenarios in which they are going to have to have an end-of-life discussion.
My own view, for what it is worth, is that I would do fewer things rather than more. That is partly because simplicity is the key to really good safeguards, in my experience. If the safeguards are really clear and simple, everybody understands them—if you ask six people, “What does this mean?”, those six will give you the same answer. The more complicated you make things, the more room there is for ambiguity and uncertainty—because different things are playing in—and the more difficult it is for the patient, their family and the medical and nursing professionals assisting them, to navigate the system.
Without in any sense wishing to curtail what Parliament might wish to do, I would make a plea for simplicity wherever possible and for accepting the extraordinary variety of people’s lives, which may have unpredictable consequences in terms of the way the end of their lives plays out.
Jake Richards
Q
Professor Whitty: I would certainly recommend that this is done by guidance or in secondary legislation, which can be adjusted if it turns out that it is not having the desired effect. Two things can change: first, we can spot things we had not thought of in the first place, however far-sighted each of us is. The second is that medicine itself changes, the diseases people suffer from change and so on.
An Act has to be durable and that is why I have my view about secondary legislation and guidance, which have the ability to adapt in a way that primary legislation cannot. The fundamentals obviously need to be in primary legislation, but these kinds of issues are often done better in secondary legislation.
The Chair
I am very mindful of the time, as it is now three minutes past 10. This will be the last question of the session.
Jack Abbott (Ipswich) (Lab/Co-op)
Q
“we must not undermine the provision of good end-of-life care for all including the outstanding work done by palliative care clinicians”.
Do we take it, by implication, that you are fearful that this Bill could undermine good end-of-life care? In your view, how might we mitigate some of those risks in the Bill?
Professor Whitty: I will give a view and then Duncan will be able, as chief nurse, to mention the parallel bit of advice that said similar things. I think all medical, nursing and health professionals very strongly believe that palliative care and pain alleviation, which is not the same as palliative care but overlaps with it, and end-of-life care, which is also not the same but overlaps with it, are essential, and in some areas are not to the high standard that we would hope for. That would be a common view across the medical profession.
My own view and hope is that the Bill should not make the situation either better or worse. It changes one particular aspect in a very important way, but it seems to me that on the principle that we should be improving end-of-life discussions, which is where end-of-life care starts from, as well as supporting further the alleviation of symptoms and the provision of palliative care, there would be no disagreement from anybody in the medical or nursing professions, any other professions or the general public. That must be fundamental to how the Bill is thought about—
The Chair
Order. That brings us to the end of our allocated time with these witnesses.
Professor Whitty: Duncan, do you want to say if you agree or disagree?
The Chair
Q
Duncan Burton: I absolutely agree with that. This is, obviously, a decision for Parliament, but it is clear that there is increasing discussion in society around death and dying, and I think that is important. It is important that we have discussions and support people with their choices at the end of life, so anything we can do to increase that is important.
The Chair
I thank our witnesses, Professor Chris Whitty and Duncan Burton, on behalf the Committee. I also thank Committee members for their short questions.
Examination of Witnesses
Mark Swindells and Dr Andrew Green gave evidence.
The Chair
Q
Mark Swindells: Good morning. I am here from the General Medical Council. The GMC, as the independent regulator of doctors across the UK, does not have a position on what the law should be on assisted dying. Similarly to what the chief medical officer said, we view it as a matter for wider society and, ultimately, Parliament. Having said that, we have looked at the Bill and, were it to pass, we would obviously be willing to work on things like the statutory code of conduct that it talks about to make sure the implementation works as well as possible.
Dr Green: Good morning. My name is Andrew Green. I am a retired GP, and I chair the medical ethics committee at the British Medical Association. We had a big survey of our members in 2020 and, on the basis of that survey, we moved from opposition to neutrality. All that means is that we neither support nor oppose any changes in legislation. That position has enabled us to reach out to people with a wide range of views and produce policy that we believe has broad support, looking particularly at the areas where it impacts on our members. We have had very positive engagement with legislators throughout the United Kingdom and the Crown dependencies, with the aim not of supporting the Bill, but of making sure that if it goes ahead, it works for doctors and patients. We have always believed that those things go hand in hand.
The Chair
Thank you very much. For broadcast purposes, can everyone make sure that they are as loud and clear as possible?
Dr Neil Shastri-Hurst (Solihull West and Shirley) (Con)
Q
“No registered medical practitioner is under any duty to raise the subject of provision”.
What are your views on the compatibility of that element of the Bill with the principles under Montgomery consent?
Dr Green: Both of these items came about because of things that were in our policy, and we are pleased to see them in the Bill. You are right that assisted dying must not become just another tick-box thing that doctors mention to patients. That must not happen, and that is why we believe that it should not fall within those two Supreme Court judgements that you mentioned. But there is another side to that coin: we think that there are some circumstances in which doctors should be able to mention this to their patients.
I will just explain why that might happen. The consultation shows that some patients find it very difficult to bring up sensitive subjects with their doctors, even when those are the most important thing on their mind. Doctors are aware of that, and I hope that we get very good at reading between the lines of what patients say to get at what is left unsaid. In those circumstances, we need to be able to open the door for the patient, so they can go into a safe space and have those difficult discussions. That is what we are talking about here.
As a clinician, it is very difficult to know when to have those conversations. When we are battling with that internally, the last thing we would want is to feel the weight of legislation behind us, so please do not pass legislation that makes it harder for doctors to understand their patients. That is why it is important that in particular circumstances we should be able to gently raise the subject.
Mark Swindells: The GMC sets guidance on decision making and consent, as you will know. That is based on the existing law, including the case law on Montgomery, so it puts a lot of weight on the patient’s autonomy, the patient’s role and the doctor’s role in supporting that in the provision of information on different options, including the option of no treatment. Our guidance follows the law, so were the law to change, we would look at it and accommodate. We do not have a formulated view on what the eligibility should be, but we know the BMA’s stance.
Dr Shastri-Hurst
Q
Mark Swindells: We have not done a forensic legal assessment of that nature, but obviously Montgomery is in case law, and Parliament has the power to set primary law. I listened to what the chief medical officer said and what Dr Green says about how restrictive or otherwise that might be in terms of the doctor’s role with the patient.
Jack Abbott
Q
Dr Green: Obviously, it would be great if we worked in a system where doctors had all the time they needed to deal with their patients. I believe that the Bill mentions a duty to provide information from the chief medical officer, and having read the Bill, to me it seems very much like this might be in the form of a website or leaflet. We believe that it is important that patients should be able to access personalised information, and we would like to see an official information service that patients could go to, either as a self-referral or as a recommendation from their GPs or other doctors. That would give them information not just about assisted dying, but about all the other things that bother people at this stage of their life, and it would mention social services support and palliative care. It could be like a navigation service as much as an information service. That might address some of your concerns.
Sean Woodcock (Banbury) (Lab)
Q
Dr Green: You are right: all medical staff have safeguarding training, and of course patients make important decisions often with the influence and help of their family members. Usually this influence is helpful, and it almost always comes from a position of love. The point at which such influence becomes coercion is difficult to find out, but my experience is that it is rare. I would recommend that you look at what has happened in other parts of the world that have more experience with this, because they have it as part of their training modules. Certainly, we would expect capacity and coercion training to be part of the specialised training that doctors who opt in would receive. I anticipate that the general safeguarding training should be sufficient for other doctors, who would obviously only be involved at that very early stage.
Kit Malthouse (North West Hampshire) (Con)
Q
As I understand it, the General Medical Council already has guidance on dealing with assisted dying if it is raised by a patient, and how doctors should handle that. How easy would it be to translate that guidance—the process struck me as something that does not hinder but also does not enable—into something more informative?
Mark Swindells: It is important to note that our guidance on assisted dying is framed in the current law, so it guides doctors to explain that it is not lawful for them to assist their patient to die. It talks about the importance of explaining other available treatment options, including palliative care; making sure that the patient’s needs are met; and dealing with any other safeguarding matters. Oure guidance does follow the law, so if the law were to change, we would obviously attend to that. It is not framed quite as you are suggesting, so I do not think that would lift and shift into what the guidance would need to be for doctors if this were to pass.
Dr Green: I do not have any experience with what you are describing, but it would certainly make sense to look at best practice in other areas.
Kit Malthouse
Q
Dr Green: As a general principle, I do not believe that unnecessary barriers should be put in the way of communication. This is such an important area for patients that it is vital that they form a good, trusting relationship with their key medical adviser, who would usually be a doctor. I also have to say that at the end of life, we depend a lot on our specialist nurses— Macmillan or Marie Curie nurses—and it might well be that they are the person whom the patient trusts most. Please do not put barriers in the way of understanding.
Kit Malthouse
Q
Dr Green: Indeed. I believe that in New Zealand—and I think in the state of Victoria, but I would need to check that—there have been official reviews that have identified those concerns, and they are looking to review the legislation.
Danny Kruger (East Wiltshire) (Con)
Q
I would like a quick clarification from Dr Green. In terms of the survey, my understanding is that the British Medical Association’s official position is to be neutral. The majority in favour of neutrality—moving away from an opposed position—were junior doctors and those not working with the elderly and the dying, whereas the great majority of doctors who work in palliative care and work with dying people remain firmly opposed to a change in the law. Is that your understanding?
Dr Green: There were some variations between specialities; that is true, but within all specialities, there was a wide variety of opinion. It is that wide variety of opinion that the BMA has based its policy on.
Danny Kruger
Q
I have a question for you, Dr Green, on the delivery of the service if it is brought into law. Is it your understanding that the Bill mandates the NHS to provide an assisted dying service? I appreciate that it is not clear in the Bill. Nevertheless, it does authorise the Government to pay for it and it establishes this right. My question to you is this: is this a medical procedure that we are proposing to legalise, and should the NHS provide it? If the answer is yes, should that be a separate service within the NHS or should it just be part of general practice?
Dr Green: We have not taken a view as to whether it should be inside or outside the NHS. That is not for us to take. We do believe that it should not be any part of any doctor’s normal job to provide assisted dying. In other words, it should be set up through a separate service with a degree of separation.
We believe that is important for patients, because it would reassure patients who may be anxious about the service that it would not just be part of their normal care. It would reassure patients that the service they were going into had proper quality and proper audit attached to it. It would reassure doctors, because doctors who did not want to have any part would not feel that it was part of their normal job, whereas the doctors who wanted to go ahead would be assured of having support, emotional support and proper training. Also, it should, hopefully, reassure the providers, who would then be assured that it would not be expected of them just as part of their normal duty. We believe a degree of separation is very important.
Danny Kruger
Q
Dr Green: I think we are always concerned about resourcing, and I can only back up what Dr Whitty said about the importance of palliative care.
Danny Kruger
Q
Mark Swindells: I would agree with you that there certainly needs to be really clear guidance for doctors on that scenario. We have not taken a view on whether that needs to be in the Bill, in regulation or in the statutory code of practice. What I would say is that we would be willing to participate in the setting of that. It would be very important to listen to the view of doctors and indeed patients who might be interested in taking such a course of action, to understand their issues.
Danny Kruger
Q
Mark Swindells: I am not trying to duck the question, but because we do not take a general view on whether the Bill should pass or not, we have not taken an established view on the delivery mechanism for it.
Lewis Atkinson
Q
Mark Swindells: We do get inquiries from doctors who are concerned that they are doing the right thing when it might become apparent to them that a patient wants to travel overseas to access assisted dying. We have taken legal advice, and on that basis, we guide doctors that it is permissible for them to provide the existing medical records to that patient, as you might under a subject access request, but to be really cautious about going any further in terms of recommending that or assisting the process more than that. That is based on our understanding of the existing law in the Suicide Act.
Dr Green: Of course, that leads to a further issue. As we heard from Dr Whitty today, this measure may progress at a different speed in Scotland and England and Wales. We also have the Crown dependencies, which are some way further ahead than the mainland Governments on it. That raises an issue for doctors who work in England and Wales but treat patients in the Crown dependencies. We would want clarity about the legal situation regarding a doctor in Liverpool who is treating a patient in the Isle of Man, should the law allow assisted dying in the Isle of Man.
Lewis Atkinson
Q
Dr Green: I do not think I ever suggested that doctors should recommend assisted dying. If I did, I apologise—
Lewis Atkinson
Sorry—I meant the provision of information for someone.
Dr Green: The provision of information would be very useful, because in a situation where a doctor was unwilling to have an initial discussion with the patient, it would provide a way for the patient to get that information that was in no way obstructive.
Lewis Atkinson
Q
Dr Green: We have not taken an official view on doctors recommending it, but I do not think it was ever in any of our minds that doctors would be recommending it as a course of action to patients.
Lewis Atkinson
Q
Dr Green: I am reluctant to make a statement on that in this forum. We will go away and discuss it, and come back to you.
Naz Shah
Q
The question that worries me is, to be able to fulfil all those actions in all cases, without fear of mis-determining, the two doctors would have to be specialists in all the relevant diseases. For example, if somebody has a brain tumour, lung cancer, or a different type of cancer, would the doctor have to be an expert in that to determine that the person is terminally ill?
From the GMC’s point of view, would we find ourselves in a situation where doctors are working outside their professional competencies and expertise? From the BMA’s point of view, how do we protect doctors from finding themselves having to diagnose life expectancy for a disease they are not a specialist in, or to determine capacity when they are not a specialist in that, or to determine a lack of coercion when they potentially do not know the patient and do not have experience of that? Finally, when the next step is taken and the court has to rely on the testimony of these doctors to protect the patient, can those testimonies safely be relied on by a court and by a judge, given all those concerns?
Mark Swindells: There are quite a few points there—let me work through them backwards. We have some existing guidance for doctors when they act as a witness—for example, in a court setting or a medical legal situation—that talks in general terms about the importance of being an appropriate witness. Inherent to that is some expertise and understanding of the topic they are assisting the court on. I suppose that those sorts of principles would be ones that, if the Bill is passed in this form—I say again, the GMC does not have a view on what the delivery mechanism or the Bill should look like—are applicable points from the guidance, which would read across.
You heard from the chief medical officer his caution with regards to going with a condition-based assessment for this sort of thing. We would not have a particular view on that, but there is one thing that I want to highlight. The Bill talks about specialism in the context and seeking advice from a psychiatrist. On the specialist register held by the GMC, there are five specialisms connected with psychiatry, so some clarity—whether the Bill is intended to cover any, or a particular one, of those—would be good.
I know that it is not restricted in the “independent doctor” and “coordinating doctor” roles in the Bill either, but we are aware that when doctors pursue a specialty, in the sense that they become accredited and go on to our specialist register, that does not fix in time their individual scope of practice or expertise. Many doctors will go into slightly different fields, or focus on one particular area, so one cannot necessarily rely on the specialist register as a current indication of a doctor’s area of competence in that way. On what the precise delivery mechanism is and the point you make about whether either of those two roles of doctor have seen the person, because we have not taken a view on what the law should be, we have not taken a firm view of any process or eligibility, but I note the point.
Dr Green: If I may, I will clarify my previous answer, having had a little more thought. I do not believe that it is ever appropriate for a doctor to recommend that a patient goes through an assisted dying process. My internal thoughts on whether it should be on the face of the Bill, contained in guidance or contained in good medical practice was the point that I was unsure about.
Lewis Atkinson
indicated assent.
Dr Green: With regard to the specific questions, no, I do not believe that a doctor has to be a specialist in the individual disease at stake to advise a patient about prognosis. I can only refer you back to what Dr Whitty said: that in the majority of cases, it is fairly clear—this applies to capacity, too—but in some cases, it is not so clear. What is important is that the doctor has the ability to seek further advice if they need it; it is not always required.
Dr Opher
Q
“registered medical practitioner who is unwilling”
to go forward with the assisted dying request
“must, if requested…refer…to another registered medical practitioner”.
Are you happy with that clause?
Dr Green: No, we are not, because we know from our survey that some doctors feel very strongly about this. The word “referral”, to a doctor, means writing a letter or communicating with another doctor to see, but some doctors would find themselves not able to do that. For that reason, we believe that there should be an information service for the doctor to direct to. There is a particular problem with the word “referral”. Doctors would not be able to be obstructive; they have the same duties under good medical practice as they do, for example, with termination of pregnancy requests.
Dr Opher
Q
Dr Green: We have not taken a view on the qualifications of the doctors involved. We had discussions about what grade they should be, for example, but we took the view that their skillset and training was more important than their grade or position.
Dr Opher
Q
Dr Green: We did not take a view on that. We thought that training and experience was more important.
Sarah Olney
Q
Dr Green: That is why it is important that doctors should be able to opt out at any stage of this. There are doctors who would find it difficult to do that, and it is important that their position is respected.
Kim Leadbeater
Q
Dr Green: What would happen is that the doctor would provide the patient—through their receptionist, through leaflets or through a telephone number—with somewhere they could get the information. You cannot just abandon a patient. They have to be sure that the patient has the ability to do what the patient wants to do.
Kim Leadbeater
Q
Dr Green: Yes. It is the “referral” word that is problematic for us.
Kim Leadbeater
Q
“respect competent patients’ right to make decisions about their care, including their right to refuse treatment, even if this will lead to their death”.
I am interested in how that fits in with those very difficult conversations. When a patient executes that right to refuse treatment, are those cases logged? Are they monitored or reported on?
Mark Swindells: There was an important piece of case law—I think in the 1990s—that clarified that a patient refusing treatment and subsequently dying is not an act of suicide. You are right that our guidance talks about the importance of a doctor explaining to the patient about the likely course of action in terms of the option for no treatment. Again, that is intertwined with the Mental Capacity Act 2005, and puts a lot of autonomy in the space of the patient, along with the consent case law that we covered before.
On the previous point about referrals, our guidance is similar to what Dr Green was saying: in the case of conscientious objection—for example, on abortion—the important point is that, from the patient perspective, they are not left with nowhere to go. If that assists, that may be a principle that helps and reads across.
Kim Leadbeater
Q
Mark Swindells: Yes. It would be important for the patient’s records to cover the points of consent and that the doctor has recorded that they have interacted with the patient that way. I do not believe it is centrally held or collated in any sense like that, but I may be wrong.
Jake Richards
Q
Dr Green: Yes, with the exception of the referral.
Jake Richards
Thank you. I just wanted to clarify that.
Dr Green: Of course, we would regard much of clause 4(4) as normal care in any case.
Jake Richards
Q
Dr Green: As Dr Whitty said, I think simplicity is the key here.
Liz Saville Roberts
Q
Dr Green: In terms of the cross-border issues?
Liz Saville Roberts
Yes.
Dr Green: I think the concerns are that patients, particularly those from the Crown dependencies, might be looking for some things—for example, report on life expectancy—from doctors on the mainland. I think it is clear that if a doctor travelled to the Isle of Man or Jersey to do the work there, the GMC would be happy for them to do so, but we would want a clear understanding that they would not be at risk of any other legislative problems—from the DPP, for example.
Liz Saville Roberts
And of course legislation is progressing in Scotland, which has different definitions from the legislation that we are discussing here.
Dr Green: Correct.
Liz Saville Roberts
Q
Mark Swindells: There are aspects in which the law will differ, including on capacity. As a UK-wide regulator, we have managed to attend to that in our guidance, so that doctors are as clear on their responsibilities as possible when they lie either side of a devolved border. There is a nuanced point with the Crown dependencies. In law, we are a UK-wide regulator, and we know that the Crown dependencies and Gibraltar will choose to use doctors who are on the GMC register. Officially, we do not legally cover those areas, but it does give us some regulatory purchase there. If a doctor wishes to remain licensed to practice on the GMC register, there is a commitment to follow our professional standards.
Sojan Joseph
Q
Mark Swindells: We do not hold data. I have seen the coverage of the Bill and the uncertainty. I think we would agree with a lot of what the chief medical officer said to you about the stepped decision that a doctor will make, depending on the importance of the situation. We try to capture that in our end-of-life care guidance. We also agree with the point about a doctor giving a central estimate. In the guidance we talk about, for example, issues with taking a second opinion where there is a greater degree of uncertainty, and the importance of doctors keeping up with the latest clinical knowledge on the efficacy of different treatment courses to come to that determination. We would agree that there is inevitably a degree of uncertainty in the central ground that the chief medical officer was talking about.
Kit Malthouse
Q
Mark Swindells: I do not believe that we use the word “refer”, but I will double-check. The word “referral”—this is part of the BMA’s position—has a particular meaning in the world of medicine. We talk about the importance, from a patient perspective, of not being left with nowhere to go, so there is some professional responsibility on the doctor to guide.
Kit Malthouse
Q
Dr Green: We would expect that to be done with sensitivity.
The Chair
Order. We have come to an end, but you may complete your sentence, Dr Green.
Dr Green: That was my complete sentence.
The Chair
Excellent. That was perfectly timed.
That brings this session to a close. On behalf of the Committee, I thank the witnesses: Mark Swindells, assistant director of standards and guidance at the General Medical Council, and Dr Andrew Green, chair of the medical ethics committee at the British Medical Association.
Examination of Witnesses
Glyn Berry and Professor Nicola Ranger gave evidence.
The Chair
We will now hear oral evidence from Glyn Berry, via Zoom—hello and welcome—and from Professor Nicola Ranger. We have until 11.25 am. Will the witnesses please introduce themselves?
Glyn Berry: Good morning. My name is Glyn Berry. I am a palliative care social worker and a lead allied health professional. I am co-chair of the Association of Palliative Care Social Workers.
Professor Ranger: I am Professor Nicola Ranger, chief exec and general secretary of the Royal College of Nursing. Previously, I was a chief nurse in acute hospitals for 10 years.
Rebecca Paul
Q
“There is a risk that without a more sustainable model of funding for palliative care, many people will choose an assisted death, as the only way to escape from unbearable suffering.”
Can you elaborate on why you say that?
Glyn Berry: Yes. As experienced social workers, working within the realms of a society that is quite often split into “have” and “not have”, we already see the despair and the difficulties that people encounter with inequitable care in palliative care services. We know that a lot of services are delivered by charities as well as statutory agencies and the trusts, and we know that the funding for palliative and end-of-life care is a real issue and has been heading that way for some years.
We would hate to see what has been happening in other countries in which assisted dying is already in place, where people feel that they have no option other than to apply for assisted dying, because they do not know what else might be out there for them. That is the role of a social worker when we work with our patients: we look at the bigger picture, not just at what is happening clinically. Obviously we depend hugely on our clinical colleagues and expertise, but our specialism, if you like, is to look at what else is out there for a patient—and for their family and friends, because they are as much a part of the patient’s journey as the patient themselves.
We also know that palliative and end-of-life care is hit and miss in terms of what people can access. Marie Curie reporting in 2024 showed that there are massive disparities in terms of better care for people at end of life or with a palliative condition, and they have a significant effect. What we say to people is that we will help them to live as long as they can as well as they can in palliative and end-of-life care situations, but that is really difficult when the resources are not there and things become a huge priority.
Rebecca Paul
Q
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.
Juliet Campbell
Q
Professor Ranger: Well, you would not really want any clinician to push this view on any patient. It has to come from the person themselves. That is the key thing around capacity and autonomy. I do not think that people should ever say to a patient or an individual, “Is this something you have considered?” It has to be led by the patient.
Dr Marie Tidball (Penistone and Stocksbridge) (Lab)
Q
Professor Ranger: It is vital that any of those barriers be removed and that we always maintain outstanding care at the end of someone’s life. The reality is that the majority of palliative care is given by nursing staff, whether it is in the community, in someone’s home, in a hospice or in a hospital. It is key that it be an expertise and a specialist practice in which someone has extra training and extra education. The skills of listening to patients, advocating for them and ensuring that they are pain-free at the end of their life—these are skills that nurses have now, and it is vital that our nursing members maintain them. They are often the one a patient will speak to at 3 in the morning when no one is there.
As Glyn said, it is vital that the wider team be included in the Bill. The Bill talks about the guidance and recommendations being for the chief medical officer, but I think it is absolutely vital that the chief nursing officer be a key part of the guidance and the drawing up of any care, because even in these circumstances it is nursing staff who will give the majority of the care.
Dr Tidball
Q
Professor Ranger: Safeguarding is part of our professional responsibility now. Whether it is for a child, an adult or an elderly person, part of our role is to be vigilant against financial misconduct, physical abuse and mental health abuse: any of those things is a responsibility of every nurse now. It is a very good and simple process. You do not have to investigate or give a judgment; you need to refer it to be investigated. That takes the pressure off an individual clinician. Our job is to be vigilant and to refer safeguarding anywhere we think that there is any form of abuse. I think that that process would remain and could be part of how we do things now.
Dr Tidball
Q
Professor Ranger: We would want more support. I am not going to say that we always get it right. Sometimes things happen that we miss and we do not report. I cannot say that we get it right 100% of the time. When the Bill talks about education and training for medical staff, it is absolutely vital that nursing staff are included because we will need to be vigilant around anyone feeling they are a burden.
The Bill would add other skills that we want to make sure that nurses are included in. Education for medical staff is absolutely pertinent for nursing staff, so that nurses build on skills they already have. There will be a difference between the care of someone wanting assisted dying and palliative care. Those are two slightly different skills and it is really important that they are not always lumped together. Being involved in assisted dying will require a specialist skill and specialist training, and we would very much want nursing to be included within that.
Dr Tidball
Q
Professor Ranger: I do. They are professionals, and I believe they would be able to.
Jack Abbott
Q
Secondly, what level of training would that person need in terms of time? We have, for example, been talking about a two-year process. If this new role came into effect, how long would that person need to be trained for to fulfil it adequately? Thirdly, do you have a sense of how many of these professionals we would need to make this a functioning system? Those are three separate questions.
Glyn Berry: To answer the first question, we feel, for the reasons I outlined earlier, that the role of an approved palliative care professional would sit beside the role of clinicians, balancing clinical and social observation and assessment.
In terms of the training, we, as social workers, already have continuous training opportunities to become best interests assessors, practice educators and approved mental health practitioners, so we envisage that the training would very much be along those lines. Doing those roles currently requires a course of training at university.
Our thoughts, at the moment, are that that would be for palliative care social workers, whether they are in charities, trusts or local authorities, or are independent, because that is where things sit with us at the moment and we know our roles. We like to think that it would roll out to other professionals, however, because assessing capacity is not specifically the role of the social worker; other professionals are able to, and do, complete capacity assessments.
It is quite difficult to answer your question in terms of numbers at the moment. If we were talking specifically about palliative care social workers, we currently have around 200 members in our association, but there will be other people out there who are not members and we do not know who they are. It is a role that could expand.
One of our other recommendations is that palliative and end-of-life care, as an aside to your question, is also brought into qualifying roles for people in training, such as doctors, nurses and allied health professionals, as well as social workers. We could see that happening in the future.
Kim Leadbeater
Q
I want to ask a bit more about what this end-of-life conversation looks like in your experience, because you are absolutely right; of all the people who are spending time with patients in their last few months of life, it is often nurses and palliative care social workers. You have a really important role to play.
I am also interested in what this would look like in reality. There has been talk of a kind of separation of palliative care and assisted dying, but, actually, I think we should be looking to embrace a holistic approach to end-of-life conversations and end-of-life care, which is what has happened in other jurisdictions. You might have a patient who has signed up for assisted dying but never does it because they have good palliative care and they work with their palliative care experts and specialists. Therefore, I think it is important that we do not try to separate these things.
I would like your views on that, but I think that one of the strengths is that having these conversations about death, about dying and about end of life is a really positive thing. Your members have an important role to play in that, so could you talk a little bit about the holistic approach that your members take?
Professor Ranger: You are right regarding the conversations and the care around dying. Having those conversations with people around pain management and symptom management is particularly the role of palliative care nurses. With assisted dying, I think the conversation is sometimes slightly different. It is talking more as a nurse in some ways, because the primary reason that assisted dying is often a discussion is a lack of autonomy, not pain. Therefore, the conversation generally tends to go in a slightly different way.
Symptom control, and being scared of pain, is understandable, and we absolutely have the ability to get that right for people, but when it comes to seeking assisted dying, the primary reason is usually autonomy, rather than pain and fear of dying. Therefore, in a practical way, I think an experienced nurse or doctor will start to gauge the difference in those conversations, because they are different. I think it is about being really clear around those conversations and really listening to what people have to say, and then having a way to be able to ensure that what an individual wants is something that you have got, and that you listen to.
I absolutely agree with Glyn about safeguards and all the things that we absolutely need to make sure are there, but the whole point of assisted dying is not to be paternalistic, but to respect autonomy. Whatever safeguards we put in with that, we have to be really careful not to ignore that right of autonomy, which is primarily what this Bill is trying to preserve.
I think it is about being really vigilant and listening. A primary role of a nurse is not to advocate their personal view, but to really listen to somebody else and to ensure that what they want is pursued. In all that discussion, it is really important that that does not get lost.
Kim Leadbeater
Q
Kim Leadbeater
Yes. It sounds as though you are saying that your professionals are trained to have those conversations, which is very reassuring. Glyn, do you want to add anything?
Glyn Berry: Just to say that I absolutely agree with Professor Ranger. My experience of working with palliative nurses, and nurses in general, is long, and I have historically had exceptionally positive experiences and continue to do so. I think that we learn from each other, and it is really important that we can have those conversations with the person and ask questions that they might never have been asked before, such as, “What is it that you want?”
Professor Ranger is absolutely right in terms of autonomy and the person having control, because once that diagnosis is given, it can be a downward spiral for a person and they feel that they lose control. Patients and families talk about that—about having no control over what is happening. In effect, that is true in terms of what is happening in the disease or illness trajectory, but it is so important to remind a person that they are still the person that they were before that diagnosis, that they will continue to be that person, and that they still have a voice. In both our roles professionally, and alongside other clinicians, that is what we seek to do all the time. That is why a multidisciplinary team approach is so important.
Ultimately, we could find that, once you have asked all the appropriate questions and you have put potential safeguards in place following conversations, a person may not choose that particular point to end their life—as you mentioned, Kim—and may continue to live to the end of their natural life.
Sojan Joseph
Q
Professor Ranger: Yes, we would want to see more support and protection for nurses. Of course, in the exploring of assisted dying legislation in Scotland, the second clinical decision maker is a nurse—so it a doctor and a nurse, whereas in England and Wales we are looking at two medically qualified practitioners. We absolutely want to make sure that the skills and support is there for nursing staff, and the ability—as I heard our medical colleagues saying—to not be involved in assisted dying absolutely has to be supported. It cannot be an expectation of the role; it has to be something you choose to proactively take part in as a conscious decision. It cannot ever be just an expectation of a nurse. We are absolutely adamant about that. The Bill cannot just support the needs of medical staff—nursing absolutely has to be included within that, both in skills and support.
Kit Malthouse
Q
Professor Ranger: It is difficult. If I am honest, we have probably not explored that enough within our thinking as a college. We know what we would not want to see, which is a situation where there is an expectation that it becomes part of a pathway. It has got to be something you actively seek and opt into. I think how that is administered probably requires more thought, if I am honest, but I would not want to see it becoming an expectation of a pathway, because then the pressure on the individual may change. That is something we need to safeguard against.
I am worried that we should not make it so bureaucratic for the individual that it becomes impossible to have their autonomy respected, but how that happens is something that needs further exploration. We would fully support making it as clear and unbureaucratic for the person as humanly possible. But we would not want to see it as a sort of pathway within our current setting, because there could then be a sense that this is something that is externally influenced rather than being something that someone actively seeks for their autonomy.
Danny Kruger
Q
Professor Ranger: It is difficult, but in my experience there are ways to try and get people palliative care, whether that is, as was said earlier, via other organisations outside the NHS and within hospice care. There are ways through the current routes to get people the care that they need.
Danny Kruger
Q
Professor Ranger: I do not think it is as good as it needs to be. We know that it is sometimes hard for people to access care. We know the struggles regarding hospices. We know far too many people die in hospital. We know there are real challenges in social care and the health service. I cannot say it is not without challenge.
Danny Kruger
Q
Professor Ranger: When you put it like that, it could be possible, but we would want to strive to have a system that does not leave anyone in distress.
Danny Kruger
Q
Do you think—I cannot decide for myself what the answer is—it should be possible for a care home director to exempt their whole service, that care home and the people who work in that care home, from being involved in assisted dying? That is where people live, after all. If somebody is having it there, it could affect the entire atmosphere of the place, and the work that all of the people there have to do. Do you think they should be protected as an organisation?
Professor Ranger: Particularly for nursing homes, I think that would be difficult. How and where people end their life probably needs further thought and further explanation. There is something about being really clear— if you are the leader of that nursing home, we would have to explore your ability to be able to advocate for the care that you want to be able to give in that nursing home. All of these practical things need further exploration.
It is difficult, because for someone who wants to end their life, if that is their home, they may want to be there. It is all of these practical things that probably need further thought and exploration, because I think it could be argued either way.
The Chair
Q
Glyn Berry: I do not think so. I think that the last question around care homes was a really good one. I am already thinking about the implications for registrations with the Care Quality Commission and what that would mean in terms of the process and the protection of staff, residents and families. It is a really helpful question to think about.
The Chair
That brings us to the end of the time allocated for the Committee to ask any questions. I thank our witnesses on behalf of the Committee, Glyn Berry, co-chair of the Association of Palliative Care Social Workers, who appeared via Zoom, and Professor Nicola Ranger, chief executive and general secretary of the Royal College of Nursing. Thank you all very much indeed.