Terminally Ill Adults (End of Life) Bill (Fourth sitting)
Wednesday 29th January 2025
(1 day, 21 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 29 January 2025 - (29 Jan 2025)
The Chair
Good morning, ladies and gentlemen. We are now sitting in public and proceedings are being broadcast. I remind Members to switch off electronic devices.
We will hear first this morning from three witnesses, all of whom join us online from Australia, where it is either early or late evening: Dr Greg Mewett, a specialist palliative care physician; Dr Clare Fellingham, deputy director of medical services for Royal Perth hospital in Western Australia; and Dr Cam McLaren, an oncologist in Australia and New Zealand. Will Members please keep questions as short as possible? We have until 10.25 am for this session, so we have very limited time.
Dr Mewett, would you be kind enough to introduce yourself and make a very brief opening comment?
Dr Mewett: I am Greg Mewett. I am a palliative care physician of many years’ standing. I live in Ballarat in central Victoria. I have been involved as a palliative care physician over many years and became involved in the Voluntary Assisted Dying Implementation Taskforce, which was charged with bringing the enactment of legislation into practice. I subsequently incorporated voluntary assisted dying into my specialist palliative care practice, and more recently have been appointed as a member of the Voluntary Assisted Dying Review Board in Victoria. I am here to assist in whatever way Committee members feel I can help.
The Chair
The Committee is deeply grateful to you. Dr Fellingham.
Dr Fellingham: My name is Dr Clare Fellingham. I am originally from the UK. I now live and work in Western Australia as a consultant anaesthetist. I also have a clinical fellowship in palliative care, and I am due to complete a master of bioethics—the study of applied ethics—this year. I chair our regional clinical ethical committee. I led the clinical implementation of voluntary assisted dying across my health service in 2021 and then became a voluntary assisted dying practitioner. I was a high-volume practitioner for two years, and I have recently scaled that back to work more with VAD Australia and New Zealand, which is the peak body that Dr Cam McLaren set up to try to represent and promote assisted dying throughout Australia and New Zealand.
I would like to contribute anything that I can, from a multifaceted position but with lots of lived experience in this space. I begin by stressing to the Committee that the law you are proposing only applies to people who are terminally ill. It is exactly the same as the laws that apply across Australia and New Zealand and very unlike the more permissive models that exist in Europe and Canada. It is so important to keep that in sharp focus. We are talking about giving dying people who do not have a choice, a choice, but it is not a choice between—
The Chair
I am sure we will come back to that. Dr McLaren.
Dr McLaren: I am Dr Cam McLaren. I am a medical oncologist and an early adopter of voluntary assisted dying. I was not involved with the campaigning for voluntary assisted dying. On the eve of its introduction in Victoria, I did the training thinking that it was just an extension or the next step in patient-centred care, as this was a patient-led adjustment in our legislation. In Victoria, our law requires a specialist in the area of disease that the patient has to be one of the two assessing doctors, and due to the low uptake among my peers, I became quite exposed to this. I have been involved in over 300 cases of application for voluntary assisted dying, and through that experience have contributed to the development and implementation of voluntary assisted dying laws in other states of Australia and also in New Zealand. I have spoken on the Isle of Man and at the World Cancer Congress in Switzerland. I am a founder of Voluntary Assisted Dying Australia and New Zealand, where I saw a space to improve the quality and safety of the provision of voluntary assisted dying care from a provider perspective. Thank you very much for having me.
The Chair
Colleagues will have noticed that there is a slight delay on the line. Take account of it when asking questions and ask them briefly, please.
Sarah Green (Chesham and Amersham) (LD)
Q
Dr Fellingham: Certainly. The training is very stringently developed, and very rigorously tested. Our management training practice, which is required of all doctors who want to practice assisted dying, was developed by our colleagues in the Australian Centre for Health Law Research at the Queensland University of Technology. It drew on extensive research that the group had conducted around the world to create an online training package that takes at least a day to complete and covers a huge amount of things that are of great concern. Not unsurpris-ingly, it includes things like how to assess capacity, how to detect coercion, how to assess for voluntariness, and how to determine the various different eligibility criteria that apply in our Western Australian law.
To be able to access that training and become a voluntary assisted dying practitioner, a person already has to be a doctor of quite some standing in their own specialty. They have to be a consultant in a specialty with at least one year of full-time practice under their belt, or a general practitioner with at least 10 years of broad experience. We are not talking about junior doctors being able to offer this; we are talking about doctors of significant clinical standing with a very broad range of patient experiences. They put themselves forwards and do that training, and then that training has to be refreshed and updated every three years.
I have five hospitals in my health network, and together with my colleagues I developed a very comprehensive package of training, education and awareness that is tailored for people who may have a role in this at various different levels, from a nurse on the ward all the way through to someone who actively taking part in the process. A very wide range of documents and training packages have also been developed by our Department of Health. In addition, all practitioners who work in this space are invited to become members of our community of practice, where we share peer education and experiences. We also have guest speakers from national and international viewpoints to continue to educate us as a group, and to ensure that our practice is consistent and in line with local and international standards.
The Chair
Do either of the other witnesses want to come in on that?
Dr McLaren: When we started this in Victoria, we saw a bit of a gap with the implementation. A lot of the education was surrounding the legalities of providing an assessment service in a way that conformed with the legislation, rather than that focused on the clinical skills and applications. I am quite proud of the role that we have had in rolling that out, in providing that peer experience, and in focusing more on some of the clinical skills that apply within a VAD context.
Naz Shah (Bradford West) (Lab)
Q
Dr Fellingham: A point of clarification: I work in Western Australia, rather than Victoria, but I can give you a view for Western Australia, which is significantly larger, so the problem you have alluded to is much more complicated. Would you like me to speak about the Western Australian context?
Naz Shah
I was talking about southern Australia, in particular. That is fine; we can move on. Thank you.
Dr McLaren: I can speak to the Victoria question, if you prefer. To answer your question, we have a state-wide service that supplies the medication across the state. Medication for pain relief is available through standard pharmacy access, so there are no barriers to accessing medication for palliative purposes in rural Australia. It is quite hard to get voluntary assisted dying medication dispensed to Mildura, which is many hours away from the single-state pharmacy, so access is more difficult for voluntary assisted dying than for palliative medication.
Naz Shah
Q
Dr Mewett: From a palliative care perspective, like Cam and Clare, I have been involved in assessing and having discussions with many, many patients who have requested assisted dying. These patients come from a whole range of socioeconomic backgrounds. In fact, if anything, they tend to come from a perhaps slightly higher, more well-educated background. There is no evidence in our jurisdiction of Victoria, where we have had five and a half years’ experience, that people who are underprivileged, less educated or vulnerable in some other way have readier access to or apply more for VAD.
The case you alluded to, like many cases that are reported from Canada, is certainly tragic in its own way, but such cases are an absolute minority compared with patients who are genuinely determined to have a choice about the way they die and when. Those are separate issues: one is a social welfare issue, and the other is a VAD issue. A patient such as that would not be found eligible, unless he was eligible under the strict criteria that apply in the state in which he lived.
Dr McLaren: As Greg touched on there, when that gentleman applied for voluntary assisted dying, that may have been one of his drivers, but it certainly would not have made him eligible. He did not access voluntary assisted dying, so the system worked. We do see higher socioeconomic status patients applying for voluntary assisted dying. That is evidenced in our Voluntary Assisted Dying Review Board reports, which show a greater proportion of people with higher levels of education. That data is freely available through the Victoria Government website.
The Chair
Dr Fellingham, you had your hand up.
Dr Fellingham: Ms Shah asked for some evidence, and I have just looked this up. Our Voluntary Assisted Dying Board reports from Western Australia are also freely available, publicly searchable documents. Each year, the board asks the patients’ reasons for accessing voluntary assisted dying. In order of commonality, the only ones over 50% are
“Loss of dignity, or concern about it…Loss of autonomy, or concern about it”,
and
“Less able to engage in activities making life enjoyable, or concern about it”.
What that reflects to me is that the type of people who seek access to assisted dying are those who tend to be, as my colleagues said, more health literate and more socioeconomically advantaged than your average healthcare consumer, and people for whom the existential reasons that upset them about their disease process are the primary drivers for seeking access to voluntary assisted dying. It is very rarely the absence of service provision or because they feel that they do not have any other choice.
Dr Marie Tidball (Penistone and Stocksbridge) (Lab)
Q
Dr McLaren: Throughout the roll-out of the voluntary assisted dying legislative process in the other states that I have been involved with across Australia, the main concern that has come from disability organisations is that they do not want to be found eligible for the sole reason of their disability, and that is involved in all our legislation—that people are not eligible purely on the basis of that. They also voice a very strong concern that they do not want to be found ineligible based on their disability either. They would like to have access to this in the event that they have a disability but then also develop a terminal illness. That has been a very strong voice throughout all the debates in Australia and New Zealand.
Dr Mewett: I wanted to reiterate that, of the 13 of us who were representing various people on the implementation taskforce in Victoria, we had one disability advocate who was a strong voice in ensuring that the laws were not discriminatory in any way against patients with any degree of disability. I would always indicate that this is a voluntary assisted dying programme. The word “voluntary” is not used often enough in this space.
The Chair
Dr Fellingham, do you wish to add to that?
Dr Fellingham: Just briefly—I will go back to the point that I was making in my introduction. It is extremely important to keep in very sharp focus that the law you are proposing in the UK is similar to the laws that exist in Australia and New Zealand and most of the laws in the United States, but it only applies to people who are terminally ill, and therefore people who only have a primary disability, a primary mental health condition, a primary dementing condition or a non-terminal condition such as anorexia or a whole host of other conditions, who are found eligible in the more permissive laws, simply would not be able to be found eligible. It is really, really important to keep it in very sharp focus that this law is only for terminally ill people.
Dr Tidball
Q
“For the avoidance of doubt, a person is not to be considered to be terminally ill”
just by those statuses.
I am very interested to hear about the implementation taskforce. I am personally keen that if the Bill passes into law, we monitor the impact on disabled people on an ongoing basis. Do you have any recommendations for how we can ensure that disabled people have a strong voice in that process, to keep the provisions in check and understand the impact, if any, on the culture within the NHS and other services?
Dr Mewett: Only that if there is an implementation taskforce—most legislation requires an implementation period; in our case, it was 18 months—a strong disability advocate is involved in it.
Dr McLaren: It would be to plant the seed of funding for research throughout the implementation and early stages of voluntary assisted dying legislation. Conducting qualitative research particularly in this area would be very revealing, to understand not only everyone’s reasons for applying for voluntary assisted dying but also those of marginalised groups and whether there are any other factors influencing their decisions.
That also extends to research conducted in culturally and linguistically diverse populations. We have a concern about health awareness, and particularly that what we affectionately call our gag clause—whereby our medical practitioners are not able to initiate conversations with patients about voluntary assisted dying—unfairly disadvantages people from culturally and linguistically diverse populations and those who have lower levels of health literacy in accessing information about the care available to them and their health options. We feel that that comes mainly from discussions with general practitioners. Not allowing those general practitioners to discuss the options with them certainly does not do them any favours.
Dr Fellingham: Both my colleagues have made excellent points that I was going to make. I think they have covered it very well.
Daniel Francis (Bexleyheath and Crayford) (Lab)
Q
Dr McLaren: We are undergoing our review at the moment. It was meant to commence after the first five years of operation of the Voluntary Assisted Dying Act in Victoria. That review has yet to be tabled or published. Certainly, the recommendations that we have submitted to it involve reducing or removing the so-called grace period, or waiting period. My experience, and that of an almost homogeneous group of practitioners, is that patients serve their own lock-out periods, grace periods and periods of reflection, as I believe you have called them, before applying. Subsequently, there are several logistical pauses throughout the process, which also instigate their own grace periods. The addition of further periods for reflection is, I think, superfluous and unnecessary.
Secondary to that, in all our Bills and Acts, we have an ability to bypass those waiting periods. Forgive me if I am wrong, but I did not see the capability to bypass any of those in your current Bill. If the person has a prognosis of less than seven days, they should be able to be expedited and not serve that time. I do not see the purpose of putting extra time on these people to apply for this.
I always say that people do not know that they have six months to live until they have six weeks to live. We as oncologists do not know that either. In a matter of one CT scan, we can change a person’s prognosis from 18 months to three months. All of a sudden, they start thinking about how they see their life ending, and then they have to engage in a process of application. Out of that three-month period, it might take a month to apply. My recommendation has always been to increase the prognostic eligibility criteria from six months to 12 months and to remove waiting periods, which patients will place on themselves regardless of the legislative requirements.
The Chair
Dr Mewett, you are nodding.
Dr Mewett: Yes—not nodding off, you will be pleased to know.
The Chair
It is not that late yet.
Dr Mewett: As I am a member of the Victorian VAD review board, as well as being here as a palliative care practitioner, I want to give you an insight. The review board is now a statutory body under the Victorian Act. We are in the process of finalising a number of recommendations to our Health Minister to make some adjustments to the law. I am not at liberty to go into detail, but many of those things, such as the gag clause and the waiting period, are really up for challenge. They have been shown not to be safeguards but, in fact, impediments and barriers to equitable and compassionate access to the scheme.
Dr Fellingham: I agree with Dr Mewett. They seem like a good idea, but they do tend to be barriers more than safeguards.
Daniel Francis
Q
Dr Mewett: One has to understand that although there are some broad similarities, there are a number of differences state by state, and now the Australian Capital Territory has legislation. In the ACT, they have passed legislation, although it has yet to come into practice, whereby one of the two assessing practitioners could be a suitably qualified nurse practitioner. In all the other states of Australia, each of the assessing practitioners has to be medically trained. Different states have different requirements. There is also, in some states, the ability for a suitably qualified nurse practitioner to be the administering practitioner in the case of practitioner-administered voluntary assisted dying.
The Chair
For the benefit of our guests, the next questioner, Stephen Kinnock, is our Health Minister.
The Minister for Care (Stephen Kinnock)
Q
Dr Fellingham: Our law was passed on 19 December 2019 and came into effect on 1 July 2021. Ostensibly we had an 18-month period, but of course something fairly dramatic in health happened in 2020. Despite that, what happened at Department of Health level began first. The Department of Health set up an implementation leadership team and gathered specialists together from all across Western Australia in various different aspects. They had eight different workstreams looking at the eight different parts of the Act that they had to operationalise—the pharmacology, the substance and what that was going to look like, the doses and how it was going to be administered, the set-up of the pharmacy, and things like that. Each of those eight workstreams worked everything out at a Department of Health level.
Approximately six months before the law was enacted—on reflection, that was probably not long enough, but covid was very much complicating everything at the time—they set up a working group with the clinical leads in the various health service provider organisations. We were then tasked with taking that broad overview and turning it into a service at the point of delivery, on the understanding that we understood the nuances and expectations of the different hospitals and health systems in which we operated.
I will not lie: it was an enormous task. I leant very heavily on our wonderful Victorian colleagues who had gone first. I do not know what I would have done if I had been the first to pave the way. Subsequently, I have been able to offer that level of assistance to each of the other states and territories that have gone after Western Australia, and then of course to the UK, Scotland and Jersey, which I have been working with quite a lot. There is a wonderful international, collaborative sense of information sharing and wanting to get this right, learning from experience and not reinventing the wheel.
The vast majority of the laws that apply across the whole of Australia and New Zealand are quite similar, and they are similar to what you are planning to legislate for in the United Kingdom. A lot of fantastic groundwork has been laid already, and it can be done even in a challenging healthcare context, like covid or our resource limitations.
Stephen Kinnock
Thank you very much for that very comprehensive answer. Is there anything that our other guests would like to add?
Dr Mewett: As I was on the very first implementation taskforce, running blind, I probably could not add much more, except to say that it can be done. One has to focus on the readiness of practitioners, the readiness of health services, the readiness of the population and a whole range of other issues, including the pharmacy service. We have a state-wide care navigator service, which assists patients and doctors in the space. We had to set up a lot of services, and that gave us the time to do so. It was very successful and very challenging, but fortunately we did not have covid in our way.
Danny Kruger (East Wiltshire) (Con)
Q
Dr Fellingham, I was interested in your point about the distinction between the Australian model and the model in Canada and elsewhere. You are suggesting that most people who seek assisted death do so for what I think you called “existential reasons”. It is certainly not because of an absence of care, although we do see evidence of that in many countries. Can you expand on why you think it is so important that we have the terminally ill definition in the Bill, rather than recognising pain and suffering as the reason for seeking assisted dying, when I think most of the public who support a change in the law do so because they recognise that many people would naturally want to avoid pain and suffering? Yesterday, we heard from people who said that that is the right reason and that we should write that into the law. Why should we not do that?
Dr Fellingham: That is a very good question and I am grateful that you have asked it. We absolutely have to keep at front and centre that pain and suffering are primary drivers for people seeking access to relief of suffering, whether that is at the end of life or in any interaction that they have with healthcare providers. I speak to remind you that these laws apply to terminally ill people, because I feel that that is a lot easier for us to understand and get our heads around, but it does not detract from the fact that suffering can be a feature of non-terminal illnesses. There are people who can suffer terribly for very long periods of time—dementia being a clear example, but one that would be incredibly challenging to legislate for at this early stage.
What is interesting about the parallels you draw between pain and suffering is that it is a quite common conception that pain is suffering and suffering is pain, and that people seek access to relief of suffering at the end of life because it is the physical symptoms that are the most debilitating. Of course, the physical symptoms can be horrendous—pain, nausea, vomiting, anorexia; there are a multitude—but they are symptoms that we tend to be really quite good at treating. We have a whole range of medications in our palliative care spectrum that are very good at treating those physical symptoms, so it is quite rare that people prioritise those when thinking about this.
But suffering is subjective and it is context-dependent. What suffering is to me might be completely different from what it is to you, even if we are suffering from what looks to be, from the outside, the same disease. Suffering and distress—the thing that makes us human: the existential overlay of our own interaction with the world and how that is impacted by our disease process—is an incredibly personal journey and one that is extremely challenging to palliate, and it is very, very distressing for patients, their families and their practitioners if we cannot support people who are suffering at the end of life. Does that answer your question?
Danny Kruger
Q
Dr Fellingham: In our law, in Western Australia, one of our eligibility criteria is that a person is suffering intolerably, in a manner that they consider intolerable, and that we have taken all reasonable steps to alleviate. The important thing about suffering is that it is a personal experience. It is not mine to judge as a clinician; it is mine to delicately and expertly tease out of a patient and to attempt to mitigate and treat to the best of my ability. Yes, suffering absolutely is what the patient says it is, and these laws are designed to honour individual patients who are dying. They are not designed for us as practitioners or clinicians looking in from the outside; they are designed to be supportive of an individual patient’s illness journey, and only they can know what the experience of that is.
Dr McLaren: It is a very good question, Mr Kruger. I think one of the distinctions is where the point of hope is and where the point of no return may be for that suffering. If you were to say that patients or people may apply for this or self-confess suffering in the absence of an end-of-life condition, that leads to questions about whether it applies to a 21-year-old with a decompensated mood disorder that could be treated or improved. When we are talking about patients within the last six months of their life, that suffering is very hard to come back from in the time that is given to them. It is about that recognition of the point of difference between hope for the future and a different type of hope—hope for improvement in symptoms or control of the situation, but not for physical improvement or a return to normal function or living. That is the real difference between legislating purely on the basis of suffering, versus in the context of suffering that will not get significantly better.
The point is that the line must be drawn somewhere. We have seen patients who have been ineligible under our laws where we have found immense suffering, and that is a difficult space to navigate in its own right, but those cases are going to happen regardless of where the line is drawn, and it needs to be in a place where people are comfortable to navigate on one side or the other. That is where the clinical education comes into the process, in terms of how we best manage that, recognise the suffering in the individual, try to make things better and work hand in hand with palliative care and other colleagues to try to improve symptoms for the patients who are not eligible under these laws.
Dr Mewett: As a palliative care physician, I spend all my professional life addressing people’s suffering in the context of an advanced, progressing, incurable illness. Palliative care, of course, approaches that from a range of different angles. I see VAD—assisted dying, voluntary —as an end-of-life choice among a range of end-of-life choices that people may or may not make. A minority of our patients will take that choice and have some control. They require and should have excellent palliative care up to the time that they die, whichever way they decide to die.
I think we should understand that despite the best palliative care in the world, there are still patients who suffer uncontrollably, unremittingly and intolerably. I believe that it is that small minority of patients who should have a legal option to take control of that stage when it is irreparable. It is not incompatible with palliative care; it is part of palliative care and an end-of-life choice, and not the philosophy of care that palliative care is.
The Chair
Colleagues, if we are to try to get everybody in, I will have to confine Members to one question each from now on. Panel, if you could, be kind and, without denying us the information we need, keep your answers as brief as possible.
Dr Simon Opher (Stroud) (Lab)
Q
Dr McLaren: Again, each of our states, as well as the Australian Capital Territory, has different legislation and therefore different processes. In broad speaking terms, say in Victoria, for example, a patient will express their wish to engage in voluntary assisted dying independently, and often they are connected to the state-wide patient navigator service, which will connect them with a doctor to receive that patient’s first request and become their co-ordinating medical practitioner. That doctor will then conduct the patient’s co-ordinating assessment and determine whether they believe the patient is eligible or ineligible. If the patient is eligible, the doctor will refer them on to a consulting doctor, or a doctor who acts as the consulting doctor, for a consulting assessment.
If that process is also approved and the patient is found eligible, they meet again with the co-ordinating medical practitioner to make a written application to engage in voluntary assisted dying. That process then goes to our review board, to ensure that it is compliant with the legislation, before we can apply for a permit to prescribe the medication. The permits are specific to our state; many other states, such as Dr Fellingham’s, do not require a specific permit for individual prescription. The permit will come back within three days, and then we write a prescription, which goes to our centralised pharmacy service. The pharmacy will wait for the patient or the contact person to contact the pharmacy and organise the delivery or dispensing of the medication.
In Victoria, self-administered oral medication will be dispensed to the patient, and that is then their property; they may use it immediately or never use it—that is completely up to them. They do not require medical attendance at that time, although I have provided that on many occasions, sitting with a patient and their family as the patient has taken their medication and died. If the medication is not used, the contact person nominated by the patient is legally required to return the medication to the pharmacy.
If the patient is unable to ingest or digest oral medication, we can apply for practitioner administration, which I believe your Bill does not currently provide for. This authorises a co-ordinating medical practitioner to administer the medication, either via a percutaneous endoscopic gastrostomy feeding tube or by other means, including intravenously, to the patient to bring about their death. I have certainly done that—I do not keep count, but I have engaged in that many a time.
Jack Abbott (Ipswich) (Lab/Co-op)
Q
Dr Fellingham: In the UK you are missing a number of the challenges that we have, such as the geographical challenges in a state as vast as Western Australia. You also have a golden opportunity to look, as you are, across every jurisdiction that already has laws in operation and cherry-pick the best bits of what is working well in those jurisdictions, and so create the very best, most robust and most patient-centred legislation you can.
The healthcare systems are broadly similar. We are both first-world, developed western countries. We are still operating in a context of resource limitation, but not resource limitation that is so prohibitive that it would make it particularly difficult to enact a law in the UK. The United Kingdom would be broadly able to follow any of the laws that exist in Australia and implement them very successfully.
Kim Leadbeater (Spen Valley) (Lab)
Q
Dr Mewett: There is no doubt that traditionally palliative care has eschewed any idea of voluntary assisted dying, for a number of historical reasons that I have spoken about in other fora and will not go into now. But it is changing, and there is a general change in attitude, especially among the younger palliative care training doctors and young clinicians, who see this as part of patient-centred care, honouring the patient’s autonomy and choice, while still addressing deeply their concerns and suffering in pain management and so on.
That will see a change. I do understand where it has come from. When one looks at it almost forensically, it does not stack up and will continue not to stack up to have someone saying, “Well, VAD is not part of palliative care.” VAD is part of patient choice and it will be part of palliative care ongoing. That will evolve over time.
I am sorry but I did not quite catch the meaning of the question about the multidisciplinary aspect, Ms Leadbeater.
Kim Leadbeater
Q
Dr McLaren: This was born out of when we started as a Victorian group. We were very individual and we interpreted the law in our own ways. We complied with it as best we could, but we did not have a centralised discussion board or peer group set up at the time. We have propagated advice through the other states to ensure that there are what we call community practices, where clinicians can discuss their cases and learn from each other.
Several months after, from I think June to November, we had no interconnection with other VAD-practising doctors. In November, we had a forum set up where we are able to connect and talk about difficult cases and how we would each interpret them. As the subsequent states came online, we were approached by some of the practitioners from other states saying, “We don’t really want to reinvent that wheel, so can we join your community of practice?” Because it was set up by our state government, they were unable to join, so I saw a gap in terms of creating an organisation where we could propagate that knowledge and not all start from scratch.
It initially started as a group of voluntary assisted dying medical practitioners, and we would discuss cases across the board and ask things like, “What would you do under your legislation?” and we all learned from that. Then we were approached by pharmacists, nurses and others involved in voluntary assisted dying provision, including legislators who wanted to contribute to the custodians of the voluntary assisted dying law, who are the people who actually run the projects. That then led to the creation of Voluntary Assisted Dying Australia and New Zealand, which is a multidisciplinary group of predominantly doctors, but we do have nurses, pharmacists and legislators involved. We have had two annual conferences where we discuss issues faced by many of our practitioners. That has been a great resource for people.
We are developing standards. We feel that in our legislation there was perhaps too much about instilling what the standards are. We feel as though the appropriate-ness of such things as telehealth should be regulated via standards rather than via legislation, which it currently is in Australia. These are the types of topics we have weighed in on and created position statements for in order to protect the laws that we believe in, uphold and like to think of ourselves as responsible practitioners of.
Dr Neil Shastri-Hurst (Solihull West and Shirley) (Con)
Q
Dr Fellingham: It is important to reflect that only people who are at quite a significant point through their own specialty careers are eligible to become assisted dying practitioners in this country. For instance, I was a consultant anaesthetist and I had already been practising for more than a year. I had lived experience of caring for patients both living and dying, both anticipated and unexpectedly, over a career spanning more than 10 years, before I came to the point of assisted dying.
To become eligible to offer assisted dying, I then had to undertake training developed in a special package by the Queensland University of Technology. That training package takes about two days to complete and there is an exam at the end before someone can become eligible. The exam has a 95% pass rate.
Once someone has qualified with that training, they are offered the opportunity to give their details to the state-wide care navigator service. The vast majority of people opt to do that. Once they do that, they basically become engaged in this incredibly supportive, collaborative and nurturing multidisciplinary team within a professional organisation that, in our state, covers all the assisted dying practitioners—the doctors—but also the care navigators, the pharmacy service, the individual voluntary assisted dying programme managers and the end of life choices co-ordinators, who exist in all our hospital systems.
Because we are all consultants in our own specialties, there is not the same level of supervisory oversight as we would give to junior doctors—there are not forms that we fill in; we do not accredit one another—but we do acknowledge that we are all learning and growing in this space. These are new laws: even the oldest in Australia has only been going for five years. Every single one of us is motivated from a place of wanting to support, collaborate, grow and learn from one another, and ensure that the care we are offering to people in this challenging space is of the absolute highest quality.
We have a really robust community of practice. We meet monthly. Half those meetings are online to allow our regional practitioners to join, and half of them are face to face. They are extremely well-attended closed sessions where, especially over the time that we have developed relationships with one another, we find an incredibly supportive space to share our experiences and to learn, grow and develop from one another.
In terms of CPD, we all have to maintain our professional registration. I have both general and specialist registration with our supervisory body, which is like the General Medical Council. I complete my mandatory CPD requirements each year, as per my specialist college. On top of that, I have just redone the refresher training, which is once every three years. That is just what was mandated in our state. If someone has not done VAD practice, they have to do the whole thing again. That is only for people who have been active in this space. That training is shorter—it is about half a day—but it is really a reflection of what we are doing on a weekly basis. We are living and breathing this work, and really strongly collaborating with everybody else who does it.
Kit Malthouse (North West Hampshire) (Con)
Q
The Chair
Who is best qualified to answer, please?
Dr McLaren: Greg, I might dob you in for the neuro-degenerative perspective, if that is all right? I have been involved in several of those cases but, as a medical oncologist, it is a little outside my field.
Dr Mewett: In most Australian states, the law was made so that a patient was eligible if they had a terminal prognosis of six months or less, except in the case of a neurodegenerative disorder—the most archetypal would be motor neurone disease, but there are a number of other neurodegenerative disorders for which prognosis can be made, including Parkinson’s—in which case it was 12 months or less. We have been trying to tease that out as part of our Victorian VAD review board work, and we could not find the logical or consistent reason why there would be two different prognoses for different disorders. We think it was because the advisory to the legislators thought that patients with neurodegenerative disorders might lose capacity to continue with the process earlier.
We and all our learned colleagues know, however, that patients with all sorts of diseases can lose their cognitive abilities during their disease, particularly with cancer and motor neurone disease. We do not see that as logical or reasonable. In fact, as Dr McLaren said, we are considering recommending that prognosis is set at 12 months, which is what Queensland legislated for and practices. A 12-month prognosis is reasonable for a whole range of reasons.
The Chair
Thank you very much. I have three questions remaining and five minutes, so we need brevity, please.
Lewis Atkinson (Sunderland Central) (Lab)
Q
Dr Mewett: I will say one thing briefly. Palliative Care Australia, which is our peak body, commissioned a report a few years back that studied the introduction of voluntary assisted dying legislation throughout the jurisdictions of the world. It concluded—this is a body that was not pro-VAD—that there was no adverse impact on palliative care services; indeed, it was often the contrary. Palliative care services were actually strengthened and enhanced because of the emphasis now being placed on more choices at the end of life. So I think that is an absolute furphy, as we say in Australia—you might say a red herring.
Palliative care services are not in any detriment. In fact, I would go on to say that this idea that palliative care doctors will leave in their droves if such legislation is introduced is just false. We respect conscientious objection in this space, and we have learned to live with each other and respect that people are entitled to set their own ethical limits.
Sojan Joseph (Ashford) (Lab)
Q
Dr McLaren: We were made aware of one situation in Queensland last year. The eligible patient was given the medication, but they ended up in hospital and died from their disease. Their husband then went home, took the voluntary assisted dying medication and died. That was obviously a tragedy and no one wants that to occur, so I do not want to be flippant in talking about it, and I hope my comments are taken in the way they are intended.
We know that spousal suicides occur when people die, and we have had one case across Australia compared with thousands of successful cases of voluntary assisted dying conduct. No other cases have been evidenced, so the rate of that is incredibly low. The voluntary assisted dying team in Queensland, on the same day that they became aware of that case, put in steps to ensure that it would not happen again, which I believe included the required return of the medication.
We also have to balance the autonomy of having the medication available to patients at 2 in the morning, when they have an exacerbation of their pain and say that enough is enough, instead of waiting for business hours when the doctors are available to come and sit with them. It is a very delicate balance and there will always be that risk. I think the balance is struck well and the safety can be upheld by still providing the patients access to their own medication.
The Chair
I am going to take one final comment from Dr Mewett, as we are practically out of time. I am sorry that there is one Member who has not been called.
Dr Mewett: To be absolutely clear, spousal suicide occurs with leftover palliative care drugs, and we had two cases of that in Victoria prior to voluntary assisted dying. It is hardly surprising that that may occur in a very rare number of cases.
The Chair
I am afraid that has to bring this session to a conclusion. Dr McLaren, Dr Mewett and Dr Fellingham, thank you for giving up your evening for us. The Committee is indebted to you. Thank you very much indeed and have a good night. While we are changing over, I call the Member in charge of the Bill to move a motion.
Kim Leadbeater
I beg to move,
That in the list of witnesses set out in the table in the sittings resolution agreed by the Committee on 21 January 2025 and amended on 28 January 2025, leave out “Professor Jane Monckton-Smith OBE” and insert “Hourglass”.
Unfortunately, we found out in the early hours of this morning that one of our witnesses is unable to join us this afternoon.
Question put and agreed to.
Examination of Witnesses
Professor Tom Shakespeare, Dr Miro Griffiths, Yogi Amin and Chelsea Roff gave evidence.
The Chair
Q
Dr Griffiths: How long do I have for the opening statement?
The Chair
It should be very brief, please, because the Committee will put questions to you and you will, I hope, have adequate opportunity to make the points you wish to make.
Dr Griffiths: My name is Dr Miro Griffiths. I am based at the University of Leeds. I hold several advisory positions on disability policy in the UK and across Europe. I am also connected to organisations such as Not Dead Yet UK.
My position is that I am overwhelmingly against the principle of and the clauses set out in the Bill, primarily because of my concerns about how it coalesces with the systemic injustices faced by the disabled people’s communities in the UK. I also have reservations about how it will affect the relationship between medical practitioners and disabled people’s communities. There are some deep concerns around issues of coercion that are not satisfied within the Bill. I also have reservations about the way in which we are navigating towards emphasising the trajectory of a health service that facilitates, and arguably accelerates, death over other forms of assistance within the community and within our health service.
Chelsea Roff: Thank you, Chair, and to the Committee for having me. I have been the director of a charity based in the United States, but now working in over 50 countries around the world, for the past 11 years. I am here in a personal capacity, and really I am here as a researcher.
My area of research has historically been the treatments and prevention of eating disorders, but last year it took a turn and I, along with my co-author, Dr Catherine Cook-Cottone, completed a systematic review of assisted death in eating disorders. Our findings really shocked me. We found that at least 60 people around the world have been euthanised or assisted in suicide—I am using jurisdiction-specific terminology there; I will use “assisted death” and “assisted dying” today—including in three jurisdictions in the United States, where I am from: Colorado, California and Oregon.
That is important for the Committee because those are jurisdictions where assisted death is legally restricted to terminal conditions. We saw anorexia nervosa listed by name as a terminal condition. Most alarmingly to me, in two of the states we could find no mention of documented cases in the annual state reports. Had a physician and her colleagues not written a paper and told the world about it, we would not know that those young women had died. In 100% of the cases we reviewed, the people were women, a third were between the ages of 18 and 30, and two thirds were under the age of 40. I have to emphasise that these were young women who did not have failing organs and did not have comorbid terminal conditions; in none—zero—of the cases we reviewed was there organ failure or comorbid conditions, and they had decades of life ahead of them.
I hope that I can be helpful to the Committee in sharing the evidence that we have uncovered internationally. The evidence is most relevant to clause 2, on the definition of terminal illness, and clause 3 on mental capacity, but it is also relevant to latter parts of the Bill, on reporting and on the approved substances used for this process.
The Chair
Order. I am going to have to urge brevity on everybody this morning, because of the time that we have not got.
Chelsea Roff: I am done.
Yogi Amin: Morning—thank you for having me. I am Yogi Amin, and I am a partner at Irwin Mitchell solicitors, where I head up the public law and human rights department. I have worked in the area of mental capacity law and public law for over 20 years. That includes on cases where there are disputes over medical treatment and safeguarding aspects. I have put a written note into the Committee this morning; I am sorry it is late, but it arrived just before I did. I can touch on some of the points in that note.
The evidence I give, and the information I have given, is in a personal capacity and should not be attributed to my employment or any organisation I am in; I am a trustee of the Royal Mencap Society. I am also a Law Society accredited legal representative, which means that as part of my practice I represent people who are vulnerable and come before the Court of Protection for decisions about disputes on mental capacity and best interests.
Professor Shakespeare: Thank you for inviting me. My name is Tom Shakespeare, and I am professor of disability research at London School of Hygiene and Tropical Medicine. I am a sociologist, and have done considerable qualitative research with disabled people.
I am here to say that most disabled people support the Bill. There are some very vocal people who oppose it—and they have every right to do so—but the Bill is supported by disabled people, probably because it is restricted to terminal illness, which I think is a good thing. I would oppose the Bill if it was relevant to all disabled people; this Bill is only relevant to people who are dying already. It defines terminal illness very clearly. For example, mental illness cannot be the sole criterion —so that would rule out people who have eating disorders, I think.
Obviously, we live in a difficult world and there is a lack of social support. I would like to see better palliative care, more hospices, and more options for disabled people and people who have terminal illnesses, but this legislation should be a tool in the toolbox for people who have terminal illness. They may not select it, but knowing it is there will give them the assurance that they will face death knowing that they have a way out and a quicker, better death if they choose that. Most will not, but some will and they should have that right.
Jake Richards (Rother Valley) (Lab)
Q
Yogi Amin: Reservations—no. In fact, I wholly recommend and support the idea as drafted to defer to the Mental Capacity Act for capacity assessments. I have been working in this area for over 20 years, before and after the Mental Capacity Act came in, and I have done cases all the way up to the Supreme Court, as well as day-to-day different cases around the country. It is well understood how capacity assessments are done, and it is ingrained into the practice of practitioners generally and of legal practitioners in the courts. Certainly when I give training to advocates, doctors and so on, it is well understood how to apply the test. That could be adapted for this particular decision, which is done here. In the past couple of years, we had a decision in the Supreme Court which settled how to approach the question of capacity, and to disturb that would concern me.
Jake Richards
Q
Yogi Amin: It is a well settled and understood approach to the law, and producing a new one would throw up a whole new conundrum, where people would be questioning how to approach it, etc. It is not broken—it works well.
The Chair
That was a specific question to Mr Amin, but it is an important issue. Does anyone else wish to come in, briefly please?
Chelsea Roff: One thing I would like to highlight in our study is that all 60 people who died—young women, mostly—were found to have mental capacity to make the decision to end their life, so I worry that mental capacity will not be an effective safeguard to prevent people with eating disorders from qualifying under the Bill.
I also note that Oregon and California, where I am from and where we have found cases, have an additional safeguard to mental capacity. That is, if there are any indications that the person might have a mental disorder, that person must be referred for a mental health assessment. It is important not to make a false equivalence between mental capacity and mental health.
We could, for instance, have a person who has a prognosis of six months or less, but their wish to die is emerging from severe depression, from suicidality. We saw very high rates of suicidality and depression: 89% were depressed and nearly half chronically suicidal when they died. Physicians emphasised, still, that the wish to die was not emerging from a mental illness, despite them having diagnosed mental illness.
Rebecca Paul (Reigate) (Con)
Q
Chelsea Roff: Thank you for that question. No, I do not think it is accurate, but I have to emphasise that laws in other countries have expanded through clinical interpretation, not just legislative amendment. There are clinicians—a very small minority—who disagree and who have characterised anorexia by name as a terminal illness, but they have also said that eating disorders qualify because of the physical manifestation of the disorder. You cannot disentangle a mental disorder from its physical effects. They cite terminal malnutrition; we have identified 25 cases between California and Colorado where malnutrition was listed as the terminal condition. I cannot rule out whether that was anorexia or something like voluntary stopping of eating and drinking, but I worry that it is the physical manifestations that will be cited and, without a mental health safeguard in the Bill, that puts a whole lot of people at risk.
The Chair
Dr Griffiths or Professor Shakespeare, do either of you wish to comment, because you have not spoken yet?
Professor Shakespeare: If you look at clause 2, the definition of terminal illness is very clear:
“a person is not to be considered to be terminally ill by reason…of…having one or both of…a mental disorder”
or “a disability”. I think that would cover that case.
Chelsea Roff: May I add one sentence? I think you have left out an operative word in that sentence, which is “only”. It reads,
“a person is not considered terminally ill by reason only of”—
Dr Tidball
Q
Professor Shakespeare: I would say that it is very important that the Bill is for terminal illness only. It should give a sense of safety to disabled people. In jurisdictions like Oregon, California and Montana, which Chelsea has mentioned, we have not had an expansion from terminal illness to, as it were, suffering. If you do not carry suffering in the Bill, you will not get into the situation that Canada got into.
I gave evidence because Canada was seeking—some people were seeking—to expand the coverage of their Act to all disabled people. They did so by referring to the Canadian charter of rights and freedoms and to the word “suffering”. They said, “Look, lots of people are suffering, not just terminally ill people”. Therefore, it is very important that it is only terminally ill people who are covered by this Bill. That, as I say, should give disabled people some support.
As you know, Marie, we talk about choice and control as being the principles of independent living. Disabled people should have rights over their lives. This applies to people who are disabled, yes, but terminally ill primarily. That is why they should have this law, which gives them choice and control over their lives. They are going to die anyway, but it removes the fear and reality of a difficult, unpleasant and undignified death.
The Chair
Dr Griffiths, do you want to add to that?
Dr Griffiths: This issue highlights a fundamental flaw with the Bill, which is the nonsensical division between a terminal illness and what constitutes being a disabled person. Section 6 of the Equality Act 2010 states that a disabled person is somebody who has a “physical or mental impairment” and the impairment
“has a substantial and long-term adverse effect”
on their
“ability to carry out…day-to-day activities.”
If you have a terminal illness, it is likely that you will be defined within the terms of what is outlined in section 6, so it is a fundamental flaw, because disabled people will be incorporated within this.
The issue also highlights this arbitrary nonsense about a six-month perspective. What constitutes six months left to live, particularly if you are engaging with technological devices, medical assistance and so on? For example, I have a progressive condition that continuously makes me weaker and has respiratory complications and so on. If I remove the ventilator that I use at night, if I remove my other medical devices and if I stop my engagement with therapeutic services, does that constitute me having a terminal illness, because my rapid acceleration towards death becomes more evident?
These concerns highlight fundamental flaws, but they also play into what a key issue: the campaigning that will continue after the Bill, if it is to succeed. You will get people who will say, “Why not five months, or seven? Why not other conditions that are not being highlighted in our current discourses?”
Sarah Olney (Richmond Park) (LD)
Q
Dr Griffiths: I think so—I think the coercion principles outlined in the Bill are incredibly weak in terms of the scrutinising and the process of how you judge whether coercion has taken place. We know that coercion is a complex issue, but put that against the context of disabled people’s lives; we are talking about disabled people who are struggling day to day to access sufficient support and to live in participatory, accessible societies. The feeling, then, of societal coercion—the feeling that this is a tolerable idea—highlights my concerns about coercion.
It also plays into the issue of support and assistance to understand what your rights are, not just in terms of what we are talking about here but broader disabled people’s rights. There is a lack of advocacy services available to disabled people, and there is a lack of support for disabled people to have accessible information about their rights. If you feel that assisted dying is your only choice—as opposed to accessing support or calling out discriminatory practices in, say, access to social care and healthcare—that highlights, again, situations where coercion will manifest. The infrastructure to support people either to respond to coercion, or to understand that they do not have to be in that position in the first place, is non-existent.
Tom Gordon (Harrogate and Knaresborough) (LD)
Q
Professor Shakespeare: When I read the Bill, I thought that it did have many safeguards. It has, for example, five opportunities for a conversation with doctors or other supporters. That is a good safeguard. I think it makes a criminal offence of dishonesty, coercion or pressure, so that would scare off people. Miro is quite right—there are people who might put influence on somebody, but I hope that they would be covered under clause 26 as having committed an offence. That would scare people who may have a particular view against assisted dying.
How can we make it stronger? We could have more of an advocate for the person who is requesting assisted dying—somebody who will support them, within the law, to make that decision or to think about their decision. We are trying to make sure that everybody who is thinking that this is for them has the opportunity to talk about it and to think about it. The time and the conversations are all about that, but maybe an advocate also would be the person who is requesting this step, who is not a beneficiary in any way of that death, and they could be a neutral party to give advice. I am not sure. However, there is a lot here. There are five conversations. I am not surprised that people thought it was strong. I think it is a strong Bill.
There is scope for doctors and other medical practitioners to act on their conscience and to withdraw from this. Miro made a useful point, which is that we do not want any disabled person frightened of their doctor or worried that their doctor, who has been supporting somebody else to die, might do that with them. In conversation, Marie, we have talked about an assisted dying service as being a part of the NHS, but I wonder whether it might be specifically around this. I think that it is worth considering whether the average doctor is the person to whom a person should take a concern or a wish to die.
So this is about advocacy and maybe having a specific service for people who want to go down that route. However, I think it is a strong Bill as it stands.
Tom Gordon
Q
Professor Shakespeare: I think the law is only one of the influences that might be involved. There is also physical health, mental health and social wellbeing. I think a multidisciplinary panel might be a better way of finding out. But I bow to my friend Mr Amin, who has a lot more experience of legal panels than I have.
The Chair
Mr Amin, do you want to comment?
Yogi Amin: The way the Bill is drafted, the judges reviewing the case are not making an order; they are declaring a plan that someone else has produced and has put in front of them. It is a strong, independent, legal and judicial safeguard, as part of the Bill. My written submission, you will note, says that the courts are well used to doing that. The courts have been doing it for many years. They have been dealing with disputes over facts, disputes over capacity and disputes over medical treatment. They are able to identify safeguarding issues. The courts and the judges are certainly able to do it. I am not speaking to the question of capacity. If the question is about whether to introduce something different from a High Court judge, I will wait to see it and scrutinise it, but as it is drafted at the moment, I would say that a High Court judge is a strong legal safeguard as part of the mix of safeguards in the Bill.
The Chair
I will come back to Marie Tidball, but I want to make it plain to the panel that, while questions are being directed to specific panellists, if anybody wishes to come in on something, do please indicate.
Chelsea Roff: To your question, Mr Gordon, about whether this is the safest Bill in the world, I know that due care has been taken to make that happen. One of my biggest concerns about clause 2 of the Bill is that it makes no distinction between a person whose illness can become terminal if they refuse or cannot access treatment—for instance, someone with diabetes. Type 1 diabetes affects 300,000 people in this country, and it often co-occurs with eating disorders. The way this is written would not prevent someone who chooses to stop taking insulin from qualifying as terminal.
In the US, we are seeing voluntary stopping of eating and drinking used to circumvent the terminal illness safeguard. I will quote the American Academy of Aid-in-Dying Medicine, which is the professional body:
“Legally, there is nothing in the letter of the law…that explicitly prohibits accepting voluntary stopping of eating and drinking as a terminal diagnosis to qualify for aid in dying.”
It describes this as a “legal gray zone” that would “essentially eliminate” the terminal illness criteria. There is nothing in this Bill as written that would prevent that, and we have to look at the letter of the law, because it expands through interpretation, not just amendments.
Dr Tidball
Q
Dr Griffiths: This plays into a broader issue around the reporting mechanisms associated with the Bill. I think there needs to be further robust action around how to collect data and allow it to be analysed, to see the trends that are occurring in why people are pursuing this option and how that may play into broader political and socioeconomic issues, such as a lack of services elsewhere or frustrations for disabled people and their families in trying to access particular services.
This goes back to a point that Tom made. While we may see popular opinion within disabled people’s communities, it is worthy of note that no deaf and disabled people’s organisation—these are organisations that are representative of disabled people who engage critically with the issues facing disabled people’s communities—has been in support of this. I would therefore encourage their representation on any form of advisory council. I would also request that disability studies scholars, who are often left out of the discourse around disability policy, are part of any form of mechanism to advise or scrutinise.
Professor Shakespeare: I think the council is a very good idea. It should reflect the range of views, as Miro says. In Oregon, disabled rights advocates have not, as I understand it, opposed the Act that they now have. Of course, it is mixed, but some disability groups are definitely in favour. There is a difference between organisations of disabled people and disabled people on this. Politically, the disability rights community are against assisted dying—they always have been. That does not mean that they reflect what ordinary disabled people want, and that is what is important. I think you should be interested in what people want, and they want this.
Sean Woodcock (Banbury) (Lab)
Q
Dr Griffiths: That goes back to my previous point around how coercion can manifest in various different ways. One can be exposed to the societal pressure to feel that your life is no longer tolerable because of the struggles that you have in terms of accessing services, provision and support. We know from data that we have people in the community who are struggling to see their GPs or consultants associated with their conditions and changes in their conditions. The coercion, I feel, will come from how society is organised, and does not respond to the injustices faced by disabled people.
Also, there is a broader, slightly different issue, which is that there is nothing in the Bill, in my view, that satisfies the concern that—if it were to pass—you would create a network of practitioners who are sympathetic to the principles of assisted dying, and therefore, when somebody comes forward to say, “I want to die”, they will be more receptive to those ideas that the individual has. They will therefore facilitate their process through that, which I think undermines any attempts to have objective scrutiny of coercion that may occur. There is nothing that stops you from saying, “I know that there are these certain people I can go to who have either been public or have supported others to have access to this service. Therefore, that is my best chance of gaining access.” That then collapses all attempts to address issues of coercion.
Chelsea Roff: To add to what Miro is saying, we have seen in our study a more subtle form of influence, and sometimes it actually comes, tragically, from the clinicians themselves. We saw 95% of clinicians tell the patient and their family that they had an incurable, irremediable illness with a prognosis of six months or less in some cases. That has an influence on a person and does not cohere with the evidence on eating disorder recovery— in fact, we have no good ways of making prognosis in eating disorders. The only good prognostic indicator we have is weight restoration.
I would also highlight—relevant to here, where we live —that the all-party parliamentary group on eating disorders just put out a brilliant report on huge gaps in the care system. I am working with a person and a family right now, who has been to the Court of Protection, whose eating disorder team presented her and used the term “not treatable” to the judge, as well as the term “in the end stage of her illness”, and predicted that she would die within six months. Eighteen months later, she and her family are still fighting for treatment and are being denied services. That is the kind of coercion I am worried about, which happens within a healthcare system that I know many of you were elected to fix. That is what so many people have called for—to fix a broken NHS. That is not my choice in terminology—I love the NHS, but I think that is what we need to be worried about.
Clause 4(4) especially to me reads like a formula for coercion. A physician could say to a young woman with an eating disorder, “You have a severe and enduring eating disorder”, which you will not find in any diagnostic text, but is used frequently in these cases and in the Court of Protection. They could say, “We have done all we can. The treatment options are exhausted”—again, you will find that in the Court of Protection—and, “Your prognosis is poor”. It leaves you with a feeling that you have nothing left to choose from, especially if you are struggling to access services.
The Chair
I mean no discourtesy to the Committee, but we have 20 minutes, and 10 Members wishing to ask questions, so we have to move this on I am afraid.
Rachel Hopkins (Luton South and South Bedfordshire) (Lab)
Q
Yogi Amin: As I said, I have worked in this area for over 20 years. I represent individuals week to week in this area and safeguarding is all across what is needed for these individuals. The professionals who are involved in their lives are regulated. We are talking about doctors who are meeting individuals, and they understand what it means to identify safeguarding triggers and where referrals are required. That makes it quite strong in this particular Bill.
I am comfortable with the wording as you have it in the Bill, and I say that as someone who has worked in the area for many years. Lawyers will go to court and pick over words, but the way it is drafted, it is understood that there is voluntariness, as described in the Bill, and coercion. I do not think that additional words are necessary to describe what is required here—it is a voluntary, free-will decision, and coercion is defined. When we are talking about a doctor trying to understand that and a court then interpreting it, I think it is pretty clear what that is, so I am comfortable with the way it is drafted.
Generally, from a safeguarding perspective, there are, as Tom said, a number of points at which professionals ask individuals for a decision on this over a number of weeks, and it goes into months. There is quite a robust process. I point also to footnote 3 for paragraph 4 of my written evidence, where I have referred to the current existing law outside the Court of Protection, where it might be thought that the person has capacity but there are concerns about coercion and so on. There is, under section 42 of the Care Act 2014, the provision for safeguarding referrals. There is, under section 222 of the Local Government Act 1972, provision for a local authority where referrals are made to bring the matter before the court under the inherent jurisdiction.
The inherent jurisdiction does not go away; it is here and available where there are concerns over the safeguarding of an individual to allow them to make their own individual, free-will decision. It is not there to do anything other than protect that individual and have a safety net around them to ensure they can make individual, autonomous decisions. Nothing needs to be tinkered with in the current Bill, because that is there—Parliament has already provided for that. Have I answered your question?
Juliet Campbell (Broxtowe) (Lab)
Q
Professor Shakespeare: It is natural and right that somebody should discuss their wishes with a doctor who supports and treats them. I do not think there is a problem there. Marie’s suggestion that there should be a wider body to look at this is very relevant. At the moment, doctors refer women for abortions, and that does not stop them also supporting pregnant women. I do not think that women would distrust their doctor because they are sometimes involved, at some point, with an abortion decision. That is quite obvious. As my colleague Yogi Amin said, the Bill covers what the terminal illness is, and why we should support people to voluntarily exercise their choices. Lots of doctors will not be in favour of this, but they will be clinically professional and they will discuss with the person. I do not have a concern about that. You are more likely to be kept alive against your will than you are to end your life under this Act.
Dr Griffiths: My first point is that, for me, the Bill raises concerns because it relies on doctors’ interpretations of prognosis. If a doctor assumes that you have six months left to live, and is therefore going to start having a conversation with you about the possibility of assisted suicide, that draws into question how we allow assumptions to be made about whether an individual has six months left to live. That is particularly the case given that we have evidence that shows that, with certain interventions or mishaps surrounding prognosis, individuals can live for months, years and decades longer. The idea of bringing in the conversation from the point of view of the medical practitioner could, arguably, accelerate one’s death—if you take into account that their idea of prognosis might be flawed.
It also, I think, raises problems, because we know that many individuals with health conditions and impairments—irrespective of whether we want to create this false line between disabled people and people with terminal illness—do not have access to advocacy or representation in these kinds of processes. Having a conversation where there is extreme credibility and validity that rests on the medical practitioner could exacerbate issues around coercion.
We could take a moment of reflection. When we were going through the pandemic, the Parliamentary and Health Service Ombudsman highlighted how medical practitioners could think about “do not attempt resuscitation” orders and how they were utilised in the disabled people’s community. That has parallels with the issue we have here, where medical practitioners will be making assumptions about whether conversations or applications should be made.
Yogi Amin: Can I just raise one point on representation? I point Members to paragraph 10 in my written submission, which tries to make the important point that if we are involving courts, individuals need access to justice. They need access to advice, and that means legal aid. I point in that paragraph to the provision of non-means-tested legal aid, just like in the case of parents of children and the withdrawal of life-sustaining treatment. Those current rules are in place for parents, and a similar arrangement could be put in place for individuals who are brought before the court in this matter.
Liz Saville Roberts (Dwyfor Meirionnydd) (PC)
Q
Yogi Amin: If the legal panel is not a High Court judge, but it is a multidisciplinary panel, then it just draws upon the people in the local areas. The Court of Protection operates in England and Wales and the judges apply the law the same way. That is what the panel would do in this case. Are you more concerned about the make-up of the panel or how they apply it?
Liz Saville Roberts
Q
Yogi Amin: Are you talking about responsibility for resourcing it?
Liz Saville Roberts
Q
Yogi Amin: Oh, I see. I suppose if there is a multi-disciplinary panel, the judiciary would appoint the individuals. It would be a judicial body, essentially. I do not know if you are talking about a tribunal that is multidisciplinary, although I know people shy away from tribunals.
Liz Saville Roberts
I think there is a question, because we are a Committee on a private Member’s Bill, as to how we ascertain these details.
Naz Shah
Q
Dr Griffiths: There is no indication of how you would place the infrastructure for support for people whose discrimination or injustice is exacerbated through an intersectional lens—for example, the cross-cutting of different experiences—and how that can be attested for within the Bill. For example, if an individual comes forward to discuss with their doctor their concerns, there is no infrastructure for how that would be acknowledged with an intersectional critique.
There is also a concern that many within disabled people’s communities from particular backgrounds, such as women, are pre-exposed to further levels of injustice that are not accounted for, and their experiences of trying to access support for certain aspects of their life are compounded by inequalities. These issues are not addressed by the Bill. In my view, if this mechanism becomes available, the issues that some individuals face in terms of injustice will play into the consciousness of their decision to go forward with this. I cannot think of any clause or amendment that would address that issue in its totality.
Naz Shah
Q
Chelsea, thank you for your evidence. Eating disorders are classified as mental disorders under the Mental Health Act. The Bill explicitly states that a person cannot be considered terminally ill only because of a mental disorder. You have also talked about the withdrawal of insulin. Could you respond to both of these? Why do you believe that eating disorders would still meet the criteria under the Bill, and likewise for the issue of stopping insulin?
Chelsea Roff: There is a false distinction being made in the Bill between a mental disorder and its somatic or physical manifestations. Mental disorders, especially eating disorders—not just anorexia—impact the body, and have life-threatening consequences. We had 20,000 acute hospitalisations for eating disorders in this country last year, and we have massive gaps in care. Those are individuals who, if they were to choose to forgo treatment or could not access treatment because they were on a wait list for a long period of time, would qualify under this Bill.
I draw your attention to the evidence I submitted with Dr Agnes Ayton from the Royal College of Psychiatrists, and Dr Angela Guarda, a leading physician from John Hopkins University. I also draw you to our own case law in the Court of Protection where we have had physicians represent eating disorders as terminal conditions, as in the end stage of their illness.
I am grateful that you have drawn the connection to diabetes, because it is not just about eating disorders. Substance use disorders would have the same effect. Outside of mental disorders, HIV/AIDS is a progressive condition that cannot be reversed by treatment. Are you okay with a 19-year-old young man who decides to discontinue treatment qualifying under this Bill? Those are the questions you have to ask. I am not, in principle, against the Bill, but you have to look at the letters on the page, because they will be interpreted after the Bill is passed. Your constituents are depending on you.
The Chair
I am sorry, but we still have more Members and questions than we have time, so I am going to come down to one question per Member.
Kim Leadbeater
Q
“an inevitably progressive illness, disease or medical condition which cannot be reversed by treatment”.
It also says, for the avoidance of doubt, that this cannot be “a mental disorder” or “a disability”. I hear your concerns, and I want to support you and work with you on this. I am keen to know: what else do you want to see in the Bill that would reassure you that this is not about disabled people or people with mental disorders?
Dr Griffiths: I am conscious of time, so I will be very quick. My first point would be, why would you stick it at six months then? Why not have it at seven days, for example, as a way to take out our concerns? If you are talking about prognosis, let us go back to Chelsea’s point and the point that I made before. My condition is a neuromuscular condition. I have had meetings with clinicians where some have referred to it as a terminal illness, some have referred to it as a life-limiting condition, and others have referred to it as a progressive condition. The articulation of the ideas and the ways in which we think about conditions show the complexity of the issue. We are talking about terminal illness, and people who are terminally ill do constitute disabled people under the Equality Act, so you cannot make the distinction.
If you want to be quite proactive about it, then why not reduce the prognosis timeframe and make it as short as possible to take out the concerns about prognosis, and the concerns around whether individuals are going to live longer or could be facilitated access to alternative treatments to prolong life? I do not understand why we are fixated on a six-month prognosis because, as we have seen in other countries, as soon as you pass the legislation on six months, you will have individuals who say, “Why not seven months? Why not five months?” You will have campaigners who will say, “This does not include me and I have been campaigning for this.” There will be pressure to change and Governments will change. There is no guarantee that you can make that the eligibility criteria will be fixed.
Danny Kruger
Q
Professor Shakespeare: First of all, a terminal illness is defined as a “condition which cannot be reversed by treatment” I know that that does not mean a cure; you are not aiming at a cure—but it says, “cannot be reversed”. Surely that would not include things like HIV and diabetes because they can be reversed. They cannot be cured; they are still there, but they can be reversed with insulin, antiretrovirals or whatever.
I think, yes, terminally ill people are disabled people almost always, but that does not mean that all disabled people are terminally ill. Even if you have a disease or a condition—like Miro does or like other people do—that will probably result in your death eventually, you are not going to die tomorrow or in six months. You may die in 16 years or whatever. It is very difficult to define terminal illness, and that is why six months, I think, is used in this Bill.
Very recently, my aunt died. She was unconscious for the last month or so of having cancer and then she finally died. She would not have been able to express her will and her preference to have assisted dying, even if she wanted it. Therefore, I think six months when you can have capacity, you can anticipate, you know you are going to die but you want to have control in the manner of your death, is more useful than seven days or less, when you might be unconscious and you might not be able to express a will or preference.
Dr Opher
Actually, my question has already been asked.
Chelsea Roff: May I respond briefly? I want to address the question. I know it is not your intention for eating disorders to be included in this Bill, and I am grateful for that. When I started our research, I thought, “We just need stronger safeguards.” That was where I began, and after looking at 33 jurisdictions around the world, I have real doubt about whether safeguards are enough; I know how difficult it is to put it on the page, and I am seeing it expand and be applied through interpretation. I disagree with Professor Shakespeare, respectfully, that diabetes is a reversible condition. You cannot go back in time and reverse that condition.
I agree that you are doing this for a noble purpose, and there are members of my family that want this Bill to go through, and yet I emphasise to all of you on the Committee that the question before you is: could this Bill have knock-on effects for some of your most vulnerable constituents? How many deaths are you okay with? If the safeguards fail once, that is a human being who maybe, in a despairing moment, was handed a lethal medication instead of the care, the treatment and the help they needed. That is what we are talking about. You really have to get this right, because those people are depending on you.
Lewis Atkinson
Q
Yogi Amin: I have worked in a range of medical treatment cases over many years, covering different illnesses and conditions, and clause 2 reads fine to me. It works. It is clear. I do not consider that it needs any additional words. I can understand, when we go to court, that cases will come through and they will fall within those definitions, and it will be clear. I do not consider anorexia to come under a terminal illness unless it is right at the end of life, and that does not really fit within the parameters of the Bill, because we are not talking about right at the end of life. We have section 63 of the Mental Health Act, which deals with anorexia, and there is force-feeding that clinicians consider. That is my view on the anorexia side of things.
Doctors will provide the evidence on terminal illness. You heard from the chief medical officer yesterday, and they will provide guidance around all of that. Subsequent to the Bill, there will be secondary legislation and then the guidance. They will provide clear guidance that will then feed into this and the evidence that will be before a judge that says, “Yes, it is a terminal illness, and this is the prognosis” and so on. It is nothing different from what we produce in medical treatment cases before the court at the moment, where the doctors produce expert reports and give evidence. They explain the condition, the prognosis and their decision on capacity, and they explain what is in the best interests of an individual if they lack capacity. As I understand it, the Bill is crafted to produce the evidence as you go along the path here, and then eventually to the judge.
Chelsea Roff: May I add one sentence, because it is related to eating disorders? I would refer to a 2012 Court of Protection case, where a 29-year-old with anorexia was described as being in the terminal stage of her illness and multiple physicians described her death as inevitable. I would also refer to a 2023 case seen at the Court of Protection, which said, “I recognise with deep regret that it will probably mean that she will die.” She was also described as being at the “pre-death stage”. Again, that young woman is still alive and still fighting for services. Although I respect what Mr Amin is saying, and I agree with his interpretation, we have case law in the UK where people with anorexia are being found to be terminal. We have to take that reality into account.
Yogi Amin: I do not think they were found to be terminal. They were described by a doctor in a case as being terminal, and that doctor may not have described it properly.
Chelsea Roff: Indeed, but a judge will be relying on doctors.
Jack Abbott
Q
Yogi Amin: Mr Conway was an extremely intelligent and brave individual who campaigned in this area. His strong view about autonomy led him to bring that case, and what he was arguing for in that case forms part of what you have here in the Bill. He was certainly asking for a process in which a decision could be made and some robust safeguards could be provided, which would end up with a court process, and that is what you have within the Bill. I also learned through that case, and others over the years, what the Human Rights Act, the European convention and parliamentary sovereignty mean here. On all three counts, the cases have always said that it is Parliament that makes the decision—so it is you who are deciding. I do not see a court overturning that.
The courts in the Conway case—the High Court, the Court of Appeal and the Supreme Court—were all very clear that it is a matter for Parliament. I really do not see the European Court of Human Rights overturning it in any way at all, and that is from my long experience. The margin of appreciation is very strong with this Parliament to make the decision. I also think, from a drafting perspective, the Bill very carefully defines the individuals—it has drawn the line. Certainly, the courts cannot do it; they cannot extend that line and they will always defer back to Parliament. If you craft the Bill as it is, I am very confident that it will be left here.