(1 day, 17 hours ago)
Public Bill CommitteesElectronic devices should be turned off or switched to silent. The only cups that I should see are those filled with the water provided in the room—no tea or coffee. Let us continue our line-by-line consideration of the Bill.
Clause 1
Assisted dying
I beg to move amendment 281, in clause 1, page 1, line 20, at end insert—
“(c) has met with a palliative care specialist for the purposes of being informed about the medical and care support options.”
This amendment would mean that illness, disease or medical condition etc, the progress of which can be managed or controlled by treatment are not characterised as terminal illness.
With this it will be convenient to discuss the following:
Amendment 299, in clause 7, page 4, line 17, after “(g)” insert
“and the condition in subsection (4) has been met”.
This amendment is consequential on Amendment 298.
Amendment 298, in clause 7, page 4, line 26, at end insert—
“(4) The coordinating doctor may not take the steps set out in subsection (3) unless they receive confirmation from a palliative care specialist that the person has had a consultation with that specialist about the palliative care options available to them.”
This will require the coordinating doctor to be of the opinion that the person has had a consultation with a specialist in palliative medicine.
Amendment 304, in clause 9, page 5, line 41, leave out “any available” and insert
“the person’s experience of specialist”.
This amendment would require the assessing doctor to discuss the person’s experience of specialist palliative, hospice or other care.
Amendment 311, in clause 12, page 8, line 14, at end insert
“and
(i) the person has had a consultation with a consultant who is a specialist in palliative medicine.”
This amendment would require that a person has had a consultation with a specialist in palliative medicine before the High Court could issue a declaration.
Amendment 281 would ensure that the patient receives advice on palliative care options from a specialist in the field. Medicine is fast-paced, with innovative and new medicines becoming available in quick succession. Although those in the profession try to keep abreast of developments, it is hard to maintain the depth of knowledge necessary in all specialties. A co-ordinating doctor may or may not have specialist knowledge in palliative medicine. Some courses may provide the opportunity to learn more, but others only touch on palliative medicine—covering it in less than a day of a five-year medical degree. Specialists who are leading in this field of medicine, innovating advances and working to palliate a patient’s symptoms at the end of life will have far greater knowledge of the specialism. Even in this wider debate, many who work in a different field of medicine or in general practice have simply got their facts wrong when speaking about palliative medicine—not through intent but because they have drawn on their own, perhaps out-of-date, experience or simply do not have the competencies to understand all that palliative care can provide.
Pain and symptom control techniques are advancing; in our debates on this Bill, people have articulated instances of poor care rather than what clinical experts are able to achieve. It is therefore essential that a patient has a consultation with an expert in the field of palliative medicine, who can alleviate a patient’s fear, support them with a plan for the end of their life, and discuss how pain and symptoms can be managed. Hearing an alternative approach to the end of life can be life-affirming, help people discuss their fears and concerns about dying, and provide a patient with what they are seeking physically, psychologically, emotionally, socially and perhaps spiritually. Specialists in palliative medicine are trained to home in on the challenges that people naturally have on receiving a diagnosis of terminal illness and are skilled at supporting a patient to explore what end of life could look like for them.
If the Committee does not pass this amendment, it would be placing itself above palliative care specialists when talking about such matters. It would undermine the need for such a specialty in medicine, like a GP who may not know the breadth of palliative medicine options for their patients. The Committee must not assume that it knows those options. Rather, it should enable those with a specialist understanding of palliative medicine to deploy their skills in this process by working through palliative care options with patients before the consideration of a path that will end with an assisted suicide.
Amendment 299 is consequential on amendment 298, which would ensure that a person has a consultation or consultations with a palliative care specialist. Amendment 298 would further embed this into the practice of managing the end-of-life process to provide the patient real choice over their options at the end of life, as what can be achieved through the practice of high-quality palliative care is often significantly different from people’s perceptions—even those of clinicians. Palliative care, like so many fields of medicine, continues to advance in its application and in the steps that can be made available to palliate a person’s pain and symptoms. When pain is difficult to control using oral or intravenous pharmacology, other interventions, such as a nerve block, can result in the absence of pain. A specialist is required to provide such a procedure, but for most people who are in receipt of palliative care, this option is rarely made available. Palliative care is about not just pain and symptom control, but the holistic journey of a patient at the end of life.
The hon. Member mentions the principle that palliative care is a holistic service. Does she agree that, given that the Bill’s advocates—including the promoter, the hon. Lady for Spen Valley—emphasise the need for a holistic range of opportunities for end-of-life care, palliative care needs to be central to that? Rather than suggesting that there is an either/or between palliative care and assisted dying, the advocates of the Bill have often stressed the importance of having both options. Does the hon. Member for Bradford West agree that it is strange that the Bill does not require palliative care consultation as part of the range of services that are offered to patients when they are having their consultation?
I completely agree, which is why the amendment tabled by my hon. Friend the Member for York Central (Rachael Maskell) is very important. I urge the Committee to accept it, as it would ensure the provision of a palliative care consultation. As my hon. Friend the Member for Spen Valley has always said, it is about having a holistic approach—we need to get back to that.
In the evidence sessions, we heard that palliative care social workers can play a pivotal role in supporting patients. Those from other professions—psychological services, chaplaincy services, physiotherapists, occupational therapists and speech therapists—along with specialist nurses and medics can all contribute to the care of a patient at the end of life. In discussions with palliative care specialists who listened to the debate on 29 November, they were perplexed by the symptoms that were graphically described in the case studies, and cited poor care as the reason for them. Many such symptoms can be controlled, and they were shocked that such examples of poor care were presented as a reason for assisted death, rather than for making good quality palliative care available to all patients.
We further heard evidence, especially from Dr Jamilla Hussain, that access to palliative care is inequitable. We know that those from minoritised communities and from low socioeconomic backgrounds have poorer access to good palliative care, and that people can have poor access depending on where they live, and on the day of the week or the hour of the day. Through this amendment, we want to ensure that everyone who is seeking an assisted death, or who has it suggested to them, as this Bill allows, is able to access a consultation or consultations with a palliative care specialist, who can dispel the myths while supporting them with their end-of-life plan.
My hon. Friend talked about the stories that we heard on Second Reading. Does she acknowledge, as Dr Sarah Cox from the Association for Palliative Medicine said, that there are cases where palliative care cannot meet a patient’s needs? We have a lady in the Public Gallery this morning whose mother had a horrible death, having had ovarian cancer and mouth cancer; she had to have her tongue removed, so she could not eat and drink, and she essentially starved to death. We have to be careful not to dismiss those cases, because they are real stories of real human beings, and we have to acknowledge the limitations of palliative care.
I absolutely agree. Nobody in this Committee, from what I have heard over the weeks of evidence that we have taken, is suggesting in any way that we are dismissive of people who actually need an assisted death and would benefit from the Bill. As I have said previously, and as Dr Jamilla said very clearly, there are some patients who clinically would benefit from an intervention such as an assisted death. I came on to this Bill Committee to ensure we have the best legislation and safeguards in place. The Bill currently does not ensure that people are aware of the options. This amendment would ensure that people have considered all options and can make an informed choice. If there is no requirement to speak to a specialist, I am afraid the Bill would do a disservice to those who might want to use it to seek an assisted death by not presenting them with those options.
In evidence from the representative of the Royal College of Psychiatrists, we heard an example of somebody who was in lots of pain and decided to seek an assisted death, but changed their mind once they understood that their pain could be alleviated. That is what this amendment is about. I urge the Committee to vote for it, because it is fundamental that we enable people to make an informed choice and to understand the services and options available to them.
Does my hon. Friend think that giving everyone access to palliative care would resolve some of the concerns about coercion and consent?
My hon. Friend comes from a mental health background, and I appreciate his expertise. We have talked a great deal about coercion—we have debated it for hours and hours—and I agree palliative care specialists, who deal with such issues as their day job, can provide that intervention and support the patient by establishing a much stronger relationship with them. I added my name to this amendment because I feel very strongly that palliative care must be a central part of the Bill if it is to provide patients a real choice at end of life. There should not be an assumption, as there is in the Bill as drafted, that assisted death is the predominant option once a person embarks on this pathway.
Let me return to the matter of minoritised voices. Dr Jamilla submitted written evidence, and spoke passionately, about the options available to people from black and minority ethnic communities. She said that they feel very much ignored. As I have said previously, palliative care is not fit for purpose because there is postcode lottery: provision depends on where a person lives, whether they have a hospice nearby, what the hospital options are and so on. There is a fear among ethnic minority communities of being pushed towards assisted death.
Does the hon. Lady agree that the purpose of this amendment is to ensure the Bill delivers for the people for whom it is intended, such as the person the hon. Member for Spen Valley spoke about? It would put in place protections for the people for whom there is a choice, and that where those choices exits, they are laid out in full and properly examined before a final decision is made.
I completely agree. It is imperative that those options—pain options and care options, including with the family—are explored in detail. The last time that I spent time in a hospice was when my brother-in-law was dying of cancer, and I remember that, as a family, we were very much involved in those conversations. Having such expertise empowers not just the patient but the family. Losing somebody who has a life-threatening condition is a difficult time for families and loved ones. When the wraparound model of palliative care, with specialist nurses and doctors, is good, it can be amazing. I have heard plenty of stories about when it is good. Last week, I mentioned a friend of mine who lost her husband last year, and she said that the palliative care nurses and doctors could not do enough. That gives the family confidence to explore the options. In that instance, that person would have benefited from this Bill—she encouraged me to support it.
As Dr Jamilla said, some people would absolutely benefit from the Bill, and they cannot be dismissed, but how do we legislate to cover people who do not have equal access to palliative care or to healthcare? There is discrimination. The covid experience that we went through recently showed the impact of inequalities. Disabled people, people with mental health conditions, elderly people, and people from black and minority ethnic communities, say that they were DNR-ed—subject to “do not resuscitate” orders. There is already a lack of trust in services, so we need to strengthen palliative care.
There is a fear among these communities that they will be pushed towards assisted dying. A consultation with participants from Pakistani, Roma, Nigerian, black Caribbean and Indian backgrounds revealed overwhelming mistrust, which is deeply rooted in the experience of discrimination and the disproportionate impact of covid-19. As one participant put it,
“They are doing this to save money…to kill us off.”
To get confidence among communities back, we need specialists people can rely on. That is what the amendment speaks to, and I hope that the Committee will support it.
I rise to briefly speak in support of amendment 281, moved by the hon. Lady and tabled by the hon. Member for York Central (Rachael Maskell).
At the moment that somebody seeks assisted death through a consultation with a doctor, they stand at a fork in the road: they can either proceed towards the assisted death about which they are inquiring, or turn towards other treatment options. On Second Reading, almost every Member on both sides of this debate stated that we need more palliative care, and everybody emphasised the value of providing good palliative care to all who need it. The amendments in this group would simply give force and power to the clear call of the House of Commons for a strong, realistic palliative care option as an alternative to assisted death, and I would be astonished if members of this Committee chose to vote them down. They give clear expression to the will of the House: that palliative care should be offered, and that it should be apparent that a patient has clearly understood their palliative care options.
I implore members of the Committee to consider what they would be communicating if they rejected the amendments. They would be saying that this is not a fork in the road, but a one-way street: there is only one way that someone is likely to go, and that is onwards to an assisted death. If that is the will of the Committee, it should vote the amendment down. If it thinks, as so many people said on Second Reading, that there should be real choice, and that palliative care should be explained and properly available, then I implore the Committee to support the amendment.
I thank my hon. Friend the Member for Bradford West and the hon. Member for East Wiltshire for their speeches. I also thank my hon. Friend the Member for York Central (Rachael Maskell), who is a fantastic campaigner for excellent palliative care, for tabling the amendment.
I cannot disagree with almost everything that has been said: people need to be given real choice, and they certainly need to be given the choice of palliative care. As the hon. Member for East Wiltshire said, people need to be offered palliative care. That is absolutely crucial to the Bill. However, the amendment would make it a requirement that a patient has met someone in palliative care. What would happen to a patient’s autonomy if they did not wish to see a palliative care doctor? Would they be excluded from the process? It is incredibly important that people have real choices with respect to palliative care in this process.
I note to the Committee the fact that clause 4(4) states:
“If a registered medical practitioner conducts…a preliminary discussion”
with a person, they have to also discuss with that person
“any available palliative, hospice or other care, including symptom management and psychological support.”
That is in the Bill. It needs to be offered.
I have had patients who have not wished to see a palliative care consultant. It is their autonomy to make that choice. I do not think that it is a wise choice—I think almost every doctor would try to push them towards palliative care—but we must not exclude those patients from accessing an assisted death if that is what they want. That does not mean that people should face a fork in the road, as the hon. Member for East Wiltshire just mentioned. This is not an either/or: sometimes people can receive excellent palliative care and still request an assisted death, as my hon. Friend the Member for Spen Valley said.
I absolutely agree with many of the things you have been saying. I totally agree that we need better palliative care—although, actually, we have pretty good palliative care. In 2017, palliative care in this country was the best in the world, and we need to rebuild back to that again. But having a requirement that someone has to have seen a palliative care consultant will weaken the Bill. I urge the Committee to reject the amendment.
It is a pleasure to serve under your chairmanship, Mr Efford. I start by gently pushing back on what my hon. Friend the Member for East Wiltshire said about this being a fork in the road. I do not see the Bill giving patients that ultimate option. They have the choice to opt for an assisted death while continuing with their palliative care all the way along; in fact, they could then decide that they did not wish to have an assisted death, although that opportunity would be open to them. I do not think that the choice is the binary one that has been presented; I am sure that was not the intention, but I just wanted to gently push back.
I appreciate your giving way. The point that we are trying to make is that it is important to provide the information about palliative care. I understand the reservations of the hon. Member for Stroud about forcing someone to see a palliative specialist, but wording can be tweaked or changed to allow that choice. The key thing is that the opportunity to meet a palliative care specialist is provided so that the patient has the option, if they so wish, to seek that information.
At the end of the day, I think we can all agree that information allows people to make the right decision for themselves. Rather than getting too hung up on the exact wording of the amendment, I suggest that—this applies to quite a lot of the amendments—we think about the spirit of what we are trying to do.
Before the hon. Member for Solihull West and Shirley continues, I should point out that when Members say “you” or “your” they are referring to me in the Chair. It has happened a couple of times. We all do it—we all make mistakes—but please make the effort not to use “you”.
I am grateful to you, Chair, and to my hon. Friend the Member for Reigate for her intervention. She is right: it is absolutely critical that patients are given the full information in order to make an informed choice. I do not think any of us would disagree with that. But actually that goes entirely with the wording of the Bill as it stands. The hon. Member for Stroud has already highlighted the relevant provision—clause (4)(4)(c), which states that the initial discussion must explain and discuss with the patient
“any available palliative, hospice or other care, including symptom management and psychological support.”
Therefore a requirement to have those discussions is already stipulated in the Bill.
My hon. Friend the Member for Reigate makes an interesting point about who has that discussion. But are we saying that only a palliative care specialist is capable of having those discussions? Of course, those who work in the field are highly trained individuals, but we must not be unfair or do a huge disservice to other healthcare practitioners who provide excellent palliative care in this country.
My father was a general practitioner for more than 40 years. He provided a huge amount of palliative care throughout his career, both in the community and in hospices. Look at Marie Curie’s own website, which talks about the provision of palliative care in this country and very much about primary care provision and secondary care provision. Within secondary care, of course, are the specialists—clinical nurse specialists, occupational therapists, physiotherapists; I could go on. But of course, as the hon. Member for Stroud will know particularly well given his former profession, there is another body of general practitioners, community nurses, district nurses, advanced nurse practitioners, pharmacists and social workers, who are all involved in this process.
I think the amendment comes from a good place; at first blush, I can see absolutely where it is coming from. But despite that, it leads us down the bureaucratic thicket that Chris Whitty spoke about.
Professor Sleeman’s evidence to me around palliative care says:
“‘Essential’ services are not provided: A good example is that our study of community services that are provided to people with advanced illness found that just 1 in 3 areas consistently provides a 24/7 palliative care telephone advice line—even though this has been a NICE recommendation since 2011…Another example is that the most recent NACEL audit (National audit) found just 60% of hospitals provide a 7 day face to face palliative care service— even though this is also a NICE recommendation, and was a recommendation in the One Chance to Get it Right report (that came out of the Neuberger review—around 2015.)”
I appreciate the hon. Gentleman’s important point, but does he agree that not every GP is able to keep abreast of all the palliative care advances being made, which palliative care consultants would know about?
I am grateful for the hon. Member’s intervention, which leads on to the point I was going to make. We are getting bogged down in nomenclature about what speciality is involved when this is actually about training. It is about whether the individual having the conversation has the requisite skills to have a meaningful conversation. Clauses 5(3)(a) and 8(6)(a) stipulate that the co-ordinating doctor or independent doctor
“has such training, qualifications and experience as the Secretary of State may specify by regulations”.
That is the key part. This is about ensuring that people having incredibly sensitive, challenging and difficult conversations with patients about choices available to them at the end of life have the requisite skills and knowledge to do so. That may not be applicable to each and every general practitioner, but those having those conversations should have that knowledge.
My hon. Friend is making a thoughtful speech, but I am concerned that he suggests that the skills required are simply the skills of conversation. The skills required are the skills to understand the patient’s condition and lay out very clearly to them their prognosis and the treatment options available to them.
With all respect to my hon. Friend’s father and other GPs, I cannot accept that every GP is fully qualified to understand the dying trajectory of the patient before them—perhaps my hon. Friend will confirm his belief that that is so. If that is true, what is the point of the palliative care profession? We have GPs already and are now introducing psychiatrists and social workers into the mix; I do not understand why on earth it should be regarded as unnecessary to include professionals in palliative care—the key skill that we all recognise as so important in this space. Why not?
I fear that my hon. Friend may be oversimplifying what I was saying. Perhaps I was not clear enough, so I will elucidate. I was certainly not suggesting that the required skills were merely those of being able to have a consultation and a conversation. I was talking about having the skills to have the information that needs to be imparted and the knowledge that underpins that and being able to articulate that within a consultation. It is a much wider picture than just having the communication skills—it is having the knowledge that underpins that. I am saying that that is not necessarily the domain only of someone who works in palliative care. There are a number of specialists who work within this field—it is a multidisciplinary field—and they all bring their expertise. The issue is about ensuring that anybody having these conversations has the knowledge base to conduct them properly.
I will try to make some progress. I want to move on to the other point I want to address, which is around bogging down the whole process with layer upon layer of bureaucracy. We are talking about a relatively small group of patients who are in the last six months of life and are then battling against the system that is meant to be helping them. If we put in layer upon layer and hurdle upon hurdle, it will become a much more difficult system for people to navigate. That does not mean that it would be a less robust system, but it would be a more difficult system. We are trying to make life easier, not harder, for those patients. This comes back to the central point that Professor Whitty made in his evidence about overcomplicating Bills: we overcomplicate Bills out of good intentions, but rarely make the safeguards more robust—in truth, we make them less safe.
I want to go back to the point about making the Bill more complicated by putting layer upon layer on it. My hon. Friend the Member for Bradford West spoke about health inequalities and how not everyone is given the same advice to the same level. If we were to introduce a palliative care specialist we would guarantee that everybody was given the same advice and information. We could therefore help reduce the health inequalities and inequalities of access to information that we know exist in our healthcare system.
The hon. Member makes a valid point. The reality is that, regardless of specialty title, there will be individuals who are better placed to have certain conversations and discuss certain issues than others. I look back at my own clinical practice: some colleagues would have had a better bedside manner than others, for example. I do not think this comes down to the name of the specialty; it comes down to the underpinning skills and knowledge. That is the point I am trying to make.
We can get bogged down by saying, “Everybody has to see a palliative care specialist”. Of course, that is open to people: if they wish to have a referral to a palliative care specialist, they can see one. However, as the hon. Member for Stroud said, some people may not want that. We cannot be removing the autonomy of patients when their decision-making process is that they choose not to engage with that. They may want to speak to their GP because they have had a relationship with them over 30 or 40 years and have the patient-doctor relationship that is so important when dealing with these important discussions. Perhaps they would feel less comfortable having that discussion with a clinician they had just met for the very first time.
I will give way because the hon. Lady has been very patient.
I am grateful to the hon. Gentleman, who is being generous with his time. I want to bring in something that is very real for me at the moment. As a result of a hit and run, I have nerve pain for which I receive steroid treatment. I had treatment a couple of weeks ago and suffer from pain at the moment. My doctor is not a specialist in nerve pain; he has to refer me to a musculoskeletal service and I have been waiting for over a year for surgery.
I mention that because we already have care pathways for specialisms such as nerve pain. My hon. Friend the Member for Spen Valley referred earlier to somebody who had cancer and it was a horrible experience. I would like to have thought that in that instance they would have been offered tube feeding. However, to go back to the point, the GP does not necessarily have the skillset. My GP, and there are lots of them in that practice—it is a brilliant practice at Kensington Street—has to refer me on. That is the point of the Bill. The amendment speaks to developing an established care pathway. If we are to pass this legislation into law, we must ensure that there is a care pathway to explore palliative care.
At the moment clause 4(4), which my hon. Friend the Member for Stroud referred to earlier, says this has to be explored in the wider term. However, what that looks like is not a specialty. For some people with cancer and palliative care needs and six months to live, their trajectories could be—
I am grateful to the hon. Lady for her intervention. She makes a number of points. First, may I say that I am sorry about her own health issues? I think she hit the nail on the head when she said that the GP may not be able to offer that service. For instance, take shoulder injections. Some GPs can do a shoulder injection with steroids; some will refer to the hospital for it. My father was a GP who could do them, but others would have referred to me when I was an orthopaedic surgeon and I would have done them in clinic.
This will not be right for every single general practitioner; the issue is about having a cohort of general practitioners who have the skill and ability, and about having a flexible system that works for patients. It all circles back to the training point. The individuals who do this have to have the requisite skills. That, of course, will be set down in regulation.
The other point that the hon. Member for Bradford West made is that clause 4(4)(c) says that any clinician having that discussion must be able to explain
“any available palliative, hospice or other care.”
It therefore follows that if the clinician is unable to do that because of a lack of skill or knowledge, they should refer on to somebody who can do it. That is the fundamental principle of having informed consent and discussion with patients. If a clinician cannot provide that information, they ask for somebody who can. That was not uncommon in my practice: if I had something that was outside of my area of knowledge or specialist interest, I would refer it to a colleague. That is how those conversations take place.
The Bill as it stands allows that flexibility for patients without confining them. But it gives them the very welcome option of a palliative care referral; that is entirely open to them—it is not closed off from them. Of course, they will be fed into the palliative care route anyway, following the trigger of their terminal diagnosis. They will be going on the journey, and having further conversations around their end of life care. Those are the points that I wish to make.
A thought has suddenly been triggered: we are talking as if the provision of this service is undertaken by the NHS, but what are my hon. Friend’s thoughts if the service were being delivered privately? How does that interact with his automatic assumption that there would be a referral to a palliative care specialist?
I do not think that offends the principle at all. Whether I was working within the NHS or the private sector, if a patient requested an onward referral to a different specialist, I would action that. If I did not have the requisite skills or knowledge, or felt that they would be better served by a different speciality, I would refer on to another clinician. I do not see how it would be treated any differently in the NHS than it would be privately. I am afraid that I do not follow that argument.
It is a pleasure to serve under your chairship, Mr Efford. I will address the amendments in two different ways. I will start by looking at the technical issues around amendment 281, and then I will look at why I believe, as other colleagues have said, that the amendments are not necessary given what already exists both in the Bill and in terms of good practice in our health service.
First, I worry that amendment 281 will not have the effect that my hon. Friend the Member for York Central (Rachael Maskell) intends. Clause 1(2), to which the amendment relates, provides an overview of the other clauses in the Bill, and therefore cross-refers to sections 5 to 22. Clause 1(2) does not impose duties on persons in and of itself. The duties are set out in the later clauses to which it refers. Adding an additional subsection to clause 1, as proposed by the amendment, would not result in a requirement that the person must meet a palliative care specialist. That is a technical detail to reflect on.
In addition, the term “palliative care specialist” is not a defined term. Palliative medicine is a designated speciality of the General Medical Council, and a doctor can apply to be entered on to the GMC specialist register for the speciality provided that they have the specialist medical qualification, training or experience. However, the current wording of the amendment means that it is not clear whether it is seeking to require the person concerned to meet with one of those specialist doctors, or whether a meeting with another medical professional specialising in palliative care—for example, a specialist palliative care nurse—would suffice. There is no equivalent specialist register for specialist palliative care nurses. It is a technical issue, but an important one.
I also point out that my hon. Friend the Member for York Central has put an incorrect explanatory note with the amendment, which refers to terminal illness. That might just be an error, but I wanted to point that out.
Coming on to the broader grouping of the provisions: as has been said by colleagues, the amendments are tabled with really good intentions by someone who cares passionately about the palliative care sector. But they are not necessary given the process that is already set out by the Bill. Both doctors already have to discuss all treatment options, and must make a referral if they have any doubt about the diagnosis. It is very clear from clauses 4 and 9 that both the co-ordinating doctor and the independent doctor must discuss all treatment options with the patient, so they will have all the options laid out before them. That is really important because we have to think about what happens in reality. This initial discussion, in many cases, may actually take place with a palliative care doctor, and in many cases it will be highly likely, given the nature of the conditions we are talking about, that the patient may already be receiving treatment or advice from a palliative care team.
We seem to have created a narrative where this conversation is happening in isolation. Actually, as other colleagues have alluded to, we have a patient-centred approach in our healthcare. This person does not just suddenly arrive and have this one random conversation. I am sure medical colleagues will correct me if I am wrong, but if a doctor is dealing with a condition of which they have very limited knowledge, one of the first things they would do would be to refer to a specialist.
As is covered in clause 9(3)(a), if the doctor has any
“doubt as to whether the person being assessed is terminally ill,”
they must
“refer the person for assessment by a registered medical practitioner who holds qualifications in or has experience of the diagnosis and management of the illness, disease or condition in question;”
Clause 9(2)(a) also states that both doctors must assess the patient’s
“medical records and make such other enquiries as the assessing doctor considers appropriate;”
They can speak to anyone they want to, and they would in reality—of course that is what they would do. They would not sit there and think, “Oh, I don’t know enough about this condition so I will just keep going.” They would refer to specialists.
It is also really important to acknowledge what goes on at the moment. I was looking at some research last night: NHS England also has comprehensive guidance on personalised palliative and end-of-life care through a comprehensive personalised care model. None of this stops with the introduction of assisted dying as a choice for people. It would continue to happen. Patients are already getting that really good level of care.
The hon. Lady is making a very good speech about how things should work and how things do work, in many cases, when the NHS does its job brilliantly. First, I want to correct the hon. Lady: subsequent amendments do impose the duty that is consequent to these amendments to clause 1, so it would be an obligation. Surely that is the point to make: what if the doctors are not as brilliant as she suggests? What if there is not an expectation that they should definitely seek expertise that they do not have themselves? To the point made by my hon. Friend the Member for Reigate, what if this service is provided outside the NHS by an independent charity or private provider set up explicitly to facilitate people’s assisted death requests, and has no intention of referring people to palliative care if they do not ask for it themselves? Would she be content for a private provider to refer somebody for an assisted death without a palliative care referral?
I do worry about the lack of faith in our professionals. We have medical practitioners on the Committee and we have heard stories of the very good practice that happens, so it concerns me that we are so cynical about our system. Ultimately, we have to put faith in our professionals to do their job and to take that patient-centred approach, as I firmly believe they do. Dr Sarah Cox from the Association for Palliative Medicine said in her evidence to the Committee:
“In clinical practice, we make all these decisions in multi-professional teams…shared decisions are much better quality, much more robust and much safer.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 74, Q90.]
I absolutely agree with her, and that would continue to be the case.
But it does not say that at all. It actually says that they have to refer, and that they have to consult with other people. That is part of the process. That is exactly what happens now. Professor Aneez Esmail, who is the emeritus professor of general practice at the University of Manchester and who has been a practising GP for over 30 years, told us in his evidence to the Committee:
“In terms of holistic care, currently when I look after dying people I never do it on my own; I am with district nurses, Macmillan nurses, or on call to a palliative care consultant. There is already a team of people looking after dying people…palliative care…works very well and it works in a multidisciplinary way. I think that this legislation will allow a much more open discussion and proper monitoring. It will improve training, guidance and everything else. People say that it will enhance palliative care, and that is what I think will happen.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 171, Q219.]
Indeed, as was referred to by the hon. Member for Solihull West and Shirley, if we consider the training included in the Bill, which doctors will undergo as part of the introduction of assisted dying, evidence from other jurisdictions shows that these are very detailed conversations where health professionals work together in the same way as they do at the moment in end of life care and decision making. As I have said repeatedly, the training is fundamental. I agree absolutely with Dr Rachel Clarke, who told us:
“If there is one thing that I would say to the Committee regarding making the Bill as robust, strong and safe as possible, it is: please consider seriously the matter of education and training”.––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 71, Q85.]
I agree 100% and I have embedded that in the Bill.
My hon. Friend quotes Dr Rachel Clarke. I was profoundly moved by her evidence. She was very clear that she wanted to talk about the NHS as it is, not as we would like it to be. Despite the efforts the Government are putting into bringing down waiting lists, there is still extreme time pressure on doctors. There are extreme waiting lists for people to access specialist care, which may impinge on the ability of doctors to carry out what my hon. Friend is asking. Does she accept that?
That brings me on very nicely to my next point, so I thank my hon. Friend for his intervention. At the moment, the Bill accommodates a two-year implementation period, which is really important because it will take time to put the procedures in place: it will take time to train people and it will take time to work holistically with the overall healthcare system. It could end up being longer than two years. If that is the case to put all the robust systems in place—to improve things, and to work holistically with palliative care and other aspects of the NHS—then that is the right thing to do, and I would be open-minded to a conversation about that.
To finish, I also note that the General Medical Council’s “Good medical practice” guide, which is the framework of professional standards, already provides that in providing clinical care a doctor
“must refer a patient to another suitably qualified practitioner when this serves their needs”.
This is what doctors do: they refer if they need extra advice; they take a holistic approach.
I just want to quickly point out that we have a check on the conversations that happen in the first stages. In clause 8, which covers the second doctor’s assessment, that second doctor must be satisfied that the individual has a “clear, settled” and, critically, “informed” wish to end their own life. So, there will be a doctor who is verifying that the person is informed properly about their options. My concern about the amendments is that, as the hon. Lady says, we are inserting now a third doctor into a system which, with regard to the panel, will already have three, four or five specialists involved in the assessment of the care.
The right hon. Gentleman is absolutely right. It feeds into comments that have already been made about how difficult we are making the process. I agree that this should be a difficult process—it should be a robust process, with thorough checks, safeguards and balances throughout—but we are in danger of forgetting the dying person at the heart of the process.
I am going to finish, if I may.
We need to be really careful that we take a person-centred approach, as happens now. Doctors, medical practitioners and healthcare professionals quite rightly take a holistic patient-centred approach. That approach will be further enhanced by the robust training the Bill incorporates, and by adding the extra layers of safeguards and protection. Really importantly, it would open up conversations about death and dying.
It is a pleasure to serve under your chairmanship, Mr Efford.
As previously stated, my role, and that of the Minister of State, Ministry of Justice, my hon. and learned Friend the Member for Finchley and Golders Green, is not to give a Government view, given that the Government remain neutral on the Bill, but to outline the legal and practical impacts of amendments tabled.
The amendments are intended to add a new step in the process set out in the Bill, requiring consultation with a palliative care specialist. The purpose of amendment 281 is to require a person to have met a palliative care specialist before completing the required steps and assessments to end their life. The purpose of the amendment is to ensure that the person has understood the full range of end of life options available to them. Our assessment suggests that the present drafting, adding a subsection to clause 1(2), would not achieve that effect without further amendments to other clauses in the Bill. The amendment would increase demand on palliative care specialists and, should Members decide to amend the Bill in this way, we would need to work with the NHS and other provider organisations to assess how to operationalise it.
Amendments 298 and 299 would require the co-ordinating doctor to have received confirmation that the person seeking an assisted death has had a consultation with a specialist in palliative medicine about palliative care options before they are able to make a first statement under clause 7(3)(a). That would mean that a co-ordinating doctor would not be able to make a statement following a first assessment, and therefore refer a person to the independent doctor for a second assessment, unless the person had had a consultation about palliative care options with a palliative care specialist. As with previous amendments, the amendment would increase demand for palliative care specialists, and we would need to work with the NHS and other provider organisations to assess how to operationalise it, should hon. Members decide to pass amendments in that area.
I have a few concerns about what we have just heard in relation to the amendment. One of them is in relation to Dr Cox’s evidence. What Dr Cox actually said was:
“The second difference, I would say, is that you are absolutely right that we do make those decisions with patients—with their families, if they wish—but in a multi-professional team. I would almost never make those decisions as an individual doctor without the support of my colleagues, for several reasons. First, as I have said already, that makes for much better decisions”. ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 74, Q91.]
To pick up on that point about Dr Cox, I think it is critical that the hon. Member for Spen Valley cited Dr Cox in support of the hon. Lady’s contention that the Bill is adequate. Dr Cox, in her evidence, was saying that there is a problem with the Bill because it does not require the multidisciplinary consultation that we all think needs to happen. Dr Cox was suggesting that the Bill should be amended in order to ensure that the NHS does its job properly, and that multidisciplinary consultations are held. Her evidence was not in support of the Bill as it stands.
On the point made by the hon. Member for East Wiltshire, the Bill does not replace what already happens, and what Dr Cox was saying was that those conversations are already happening in a multidisciplinary way. We do not take that away.
One of my concerns is that although the Government position in relation to the Bill, as they have said, is neutrality, the Government, in my opinion, have taken a position without an impact assessment, which might suggest that there is some ambiguity. Would the Minister therefore support redrafting potential amendments to include that? If it did specify a doctor or nurse, would the Government then, in their tidying-up, be prepared to accept that amendment?
Referring back to Dr Cox, she said:
“We need to make sure that the 75% to 90% of people who are dying and need palliative care are getting it. We need to make sure that there is not inequity in palliative care, so that you do not have to be white and rich and have cancer to get good palliative care. We need to make sure that hospitals have seven-day services. Seven-day-a-week cover is unavailable at 40% of hospitals.” ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 78, Q101.]
Does my hon. Friend agree that we need an inequality impact assessment to understand the current position and to get that right, in line with the Bill?
My hon. Friend is absolutely right. Without the impact assessment, how do we know what we are dealing with? That would be a normal way of progressing a Bill and dealing with amendments such as these. It feels as though we have just talked about something when the Government have already had a position on it, or have supported a particular position on an amendment.
To conclude, I will press the amendment to a vote, simply because it is important that we explore every option. We are already specifying what doctors have to do. I maintain again that there are 100,000 people in this country who do not access palliative care as it is. Palliative care is crucial when we are talking about end of life and people who have had a diagnosis of less than six months to live.
We will talk about illness and diagnosis in the next round of amendments, but on this amendment, I do not think that ensuring that somebody has at least explored that option is, as the hon. Member for Solihull West and Shirley repeated at least three or four times, “bogged down”. For me, it is not bogging down when we are talking about providing assisted death. The Bill is the biggest legislation on a conscience vote since 1967 in this House, and I do not care how long it takes. I feel very strongly that if we are to deliver a Bill that my hon. Friend the Member for Spen Valley said has the tightest safeguards in the world, then this debate has to happen. These conversations must happen and be explored not just for us here as parliamentarians, but in order for us to go away and say that we have done the best we can.
Question put, That the amendment be made.
I point out that this is an opportunity to discuss clause stand part, not to cover the ground of amendments that have already been debated.
I will be quick, Mr Efford. I appreciate that we have been exhaustively over the detail of the amendments. I deeply regret that none of the amendments that were tabled to introduce stronger safeguards has been accepted. I want to take this opportunity to explain briefly what the Committee has done by rejecting those amendments and what we will be doing by agreeing to the clause without the amendments. I will not seek to divide the Committee on the clause, because I recognise that it enables the whole Bill to proceed, as the House wished on Second Reading, so I recognise that the principle of the Bill is represented in the clause. We wanted to tighten it, but have failed to do so.
I say gently to the hon. Member that—particularly on the previous clause—I have been very sympathetic to several of the amendments. Candidly, however, with due respect to all the hon. Members across the House who submitted this, I do not think that they have been particularly well written. I think that they leave quite a lot of ambiguity in a lot of areas. We had a discussion in the week before the recess, on a number of areas, about the word “only”. I heard it suggested earlier that the principle is about the spirit in which things are taken.
The reality is that I am very sympathetic to a lot of what is proposed, but a number of the amendments leave quite a lot of open ends. That has been a particular issue. I have been very open and have said that in principle I am supportive of assisted dying, but that I could not support it because the Bill was not strong enough in its current state. I do not think that the amendments tabled so far will strengthen the Bill; in fact, they might leave a lot of open ends, despite the very good intentions behind a lot of them.
I am grateful to the hon. Gentleman for explaining why, having opposed the Bill on Second Reading, he now seems to be supporting it. I wish I had heard, during our debates in the past two weeks, his specific objections to the amendments. If he felt, as he says, that the Bill is not strong enough, we would have welcomed his own amendments to strengthen the Bill in a form of words that he would find adequate. Perhaps that is what we will hear from him.
I did articulate a number of times where I felt that some of the amendments were not tight enough in those areas.
The hon. Gentleman has been on his feet; I appreciate that and am very grateful for his contribution to the debates that we have had.
I simply want to make the point that what the House voted for on Second Reading was the principle of assisted dying. What many members of the public who support the Bill think they are getting is a Bill that is safe—a Bill that is restricted explicitly to people at the very end of their life, who face extreme pain and suffering as they die; who are fully informed of what they are doing; who face no questions of external or indeed internal coercion; who have the absolute ability to understand what they are doing. Those are the things that people want to see in the Bill; those are the things that we have sought to effect through the amendments that we have tabled, and which the Committee has rejected.
Very explicitly, as a result of the rejection of these, I believe, very plainly written amendments, the fact is that under this Bill you can be depressed and suicidal and still regarded as having capacity to have an assisted death. You can be very marginalised—you can be a prisoner, you can be homeless—and still be regarded as eligible. You can have been influenced or encouraged by others and still be eligible. You can do it because you feel a burden. You do not need to be in any kind of pain. You do not need to be in the tiny proportion of cases that palliative care cannot help. As the hon. Member for Spen Valley accepted in the previous sitting, you can seek an assisted death for the sole reason of saving your family money, and you would be granted an assisted death on those grounds. The fact is that in rejecting these amendments, the Committee has decided and has demonstrated that the Bill is much wider than the campaigners portray.
I want to end with this point. I think there are two ways of approaching assisted dying—two essential framings of a Bill to legalise it. One is an autonomy Bill, which simply says that if people seek help to commit suicide, within certain broad parameters they should be able to do so, and there is no question of other people interfering with that choice; if they sign the requisite paperwork, they should be able to have an assisted death. The alternative is what we might call a safeguarding Bill—one where eligibility for the procedure is strictly limited and there are very strong, robust safeguards in place to protect the most vulnerable people.
The hon. Lady, and Members speaking in support of the Bill, have repeatedly emphasised that this is a safeguarding Bill. They want this Bill to be built around safeguards for the vulnerable. They respect the arguments that we make about the dangers that an open-ended assisted dying Bill would create. But the fact is that, as we have seen in the course of the debates on this clause, this is not a safeguarding Bill; it is an autonomy Bill. It is one that allows people to proceed to an assisted death because they want one, if they meet certain very loosely drawn criteria.
The reality is that this Bill is both. Of course it is about personal autonomy, choice and dignity for people who are coming towards the end of their life, but it has to be safeguarded as well. It is both. If I may say so, I think that the hon. Member makes quite an unfair characterisation of the robust, powerful debate that has taken place in Committee during the time that we have spent together. I think it has been extremely well informed. People have listened intently to other points of view and opinions, and it does the Committee a disservice to suggest otherwise.
We are all being very courteous, and it is absolutely right that we should be. I have absolute respect for the good faith of every Member here, but let us not use cotton wool in these debates. I am sorry to say that I do not accept that the Committee has listened—well, it might have listened closely, but it has not accepted a single amendment, including amendment 281, which would have put into law the principle in which the hon. Member for Bradford West believes, which is that palliative care should be an option. Why was that not accepted? The Committee has decided that it will proceed with the Bill as it is.
The fact is that the Bill will give maximum autotomy, within very broad parameters, to patients, many of whom will be very vulnerable. It is an autonomy Bill masquerading as a safeguarding Bill. When we attempt to strengthen the safeguards, they are described as bureaucratic hurdles. If the Bill becomes law, I worry about what will happen to the very limited safeguards that do exist. What we see elsewhere will happen, which is that the safeguards that do exist are treated as bureaucratic hurdles. They are in fact treated, and explicitly described, as we heard from the Australian witnesses, as barriers to a human right. What were safeguards become discrimination. I am afraid that that is the road we are going down.
The point about autonomy is often made. As I say, I think that this Bill actually has autonomy at its heart. The hon. Member for Spen Valley is right to make that point. That is really what is going on here. She wants people to be able to request help to commit suicide—to end their lives. The fact is that for the most vulnerable people, creating this option, especially when we have now switched off the obligation to seek a palliative care pathway and directed people straight down the road towards an assisted death—
I am sorry if it offends Members, but the fact is that the Bill in its present form, with the amendments rejected, will place no obligation on doctors to refer people to palliative care or to seek a palliative care consultation. Many will do so, of course—many good doctors will do exactly that—but they will not be obliged to. If we are imagining that every doctor will be as brilliant as the best doctors, I am afraid that I will have to talk about the Liverpool care pathway and the many tragic scandals that we are constantly dealing with. It is simply not the case that the option of a palliative care consultation equates to the absolute expectation that it will happen.
We have debated that issue; I apologise.
My concern is that the Bill, which is masquerading as a safeguarding Bill but is actually an autonomy Bill, will end in less autonomy for the most vulnerable patients, who will find themselves on this conveyor belt, internally pressured and encouraged to seek an assisted death when it is not in their interests. I invite the Committee to reflect on what we have done, but as I have said, I do not propose to divide the Committee on clause 1 stand part.
Under our current law, assisting someone to commit suicide is a criminal act. Clause 1 of this Bill is where we cross the Rubicon, moving away from well-established principles into a new era in which the state is empowered to help individuals to die.
This monumental decision is one for Parliament in the coming months. However, what we must do on this Committee is bolster the safeguards so that the Bill is truly as safe as it can be. Our priority must always be the vulnerable: those who could be coerced into something that is not in their best interests, and those with no one to advocate for them or protect them, who could end upbeing pushed into a process because that is the easiest and cheapest option for everyone. This law must work for everyone, not just the privileged few.
That is why I am so disappointed that at the end of nearly three days of debate, there has been not one improvement to the safeguards—not one. We asked for amendments to exclude people with impaired judgment and the depressed and suicidal; this Committee said no. We asked to protect those who are unduly influenced or encouraged by others to seek assisted dying—
Order. We are not discussing the amendments again now. This debate is about clause 1 standing part of the Bill.
Thank you, Mr Efford. I am perplexed as to why some of the straightforward improvements to the safeguards have not been accepted. That should give us all pause for thought. If everyone here wants this to be the safest assisted dying service in the world, we must learn from other territories and improve the safeguards. Our priority should not be to make the service as accessible as possible, with as few barriers as possible, or to make it as easy as possible for medical practitioners to sign off. Time and again, throughout our proceedings, the importance of autonomy has been given as the reason why amendments cannot be accepted, but surely that must be balanced against what is in someone’s best interests.
It is clear that in other areas of medicine a best interests approach is taken, for example under section 63 of the Mental Health Act 1983, which states:
“The consent of a patient shall not be required for any medical treatment given to him for the mental disorder from which he is suffering”.
A patient can thus be deemed to have capacity, and yet still receive treatment that they have refused, for example in the force-feeding of a young girl with anorexia. Those who argue for full autonomy would no doubt rail against this best interests approach. However, I suggest that it is always worth considering what we would want to happen if it were our daughter.
This is not an easy balance to get right—I completely concede that—but right now the Bill has no best interests component. That means that if anyone inadvertently qualifies for assisted dying but should not, for example an anorexic girl who has refused treatment, there is no safety mechanism to take her out of scope. The amendment tabled by my right hon. Friend the Member for Braintree (Mr Cleverly) would have gone some way to addressing that.
Clause 1 will profoundly change how society views suicide. Data from overseas territories indicates that introducing assisted dying can actually increase the number of unassisted suicides. In Oregon, whose system this Bill is specifically based on, non-assisted suicide has increased by a statistically significant amount. That demonstrates the seismic shift in attitudes that accompanies this, so when we tell our young people that suicide is not the answer and to seek help, we must do so knowing full well that the key message will be undermined by the availability of an assisted dying service, which may be plastered across billboards and advertised on daytime TV.
I thank the hon. Member for his intervention, but I respectfully suggest that that is not the case and there is data. Professor David Paton found a 6% increase overall, and interestingly it was 13% for women.
I would be interested to know whether that data shows a link or a direct causation effect.
I thank the hon. Lady for raising that point. I think that what has been looked at is the number of unassisted suicides. The hon. Lady makes the good point that obviously we need to look at all the different factors that could be part of that, but I am just making the point that when we look at territories that have introduced assisted dying, we find that at the point at which it is introduced, we generally see, in most territories, an increase in unassisted suicide. I do not think that we should rush to disregard that. We need to recognise that in helping a small group of people at the end of their life, which undoubtedly this Bill will do, there will be a price to be paid. That price will be paid by our young people and other vulnerable groups.
I will not vote in favour of clause 1—I do not think that there will be a Division on it anyway—but I will not oppose it either, for the reasons that my hon. Friend the Member for East Wiltshire set out. I understand that it is the key clause in order for us to progress and continue the debate, which is what Parliament wishes us to do, but I hope that the Committee will be more receptive to improving the safeguards as we progress through the Bill. The amendments really were tabled in good faith. We did our best to write them in a clear way, but obviously the private Member’s Bill process makes that more difficult. This is not a Government Bill, but we are all doing the best we can to table amendments that would improve the safety of the Bill.
I just have some concluding remarks. None of the amendments was voted for. I feel that in the clause 1 stand part debate, huge opportunities have been missed. I have talked a lot, throughout the debates, about the issues of people from ethnic minority communities. Opportunities were missed to safeguard disabled people and people from ethnic minority backgrounds.
My hon. Friend the Member for Ipswich made a point about amendments being clear, and about ambiguity. The truth is that if the amendments were supported in principle, they could have been tidied up by Government. There are some good amendments that could have been clarified by the Government. In principle, they were good options. I struggle with the whole narrative throughout the debate on clause 1: “Yes, we accept the principle, but we are not going to do it because it is ambiguous or the wording is incorrect.” There is lots of wording that we will debate throughout the rest of the Bill that is not quite clear, and that is the whole point of going through this exercise. Going forward, I encourage us, as the hon. Member for Reigate did before me, to do as we have been doing, with sincerity, in trying to make this Bill the best in the world it can be, as my hon. Friend the Member for Spen Valley intends.
I will make some brief remarks on the legal and practical effect of clause 1, as amended, to assist hon. Members in making their own assessment. Clause 1 sets out the eligibility criteria that a person must meet in order to request to be provided with lawful assistance to end their own life under the provisions of this Bill. A person must be terminally ill; this term is defined in more detail in clause 2.
Clause 1(1) sets out a further four requirements, which require that a person must also have the necessary capacity to make the decision, which is to be read in accordance with the Mental Capacity Act 2005; be aged 18 or over; be ordinarily resident in England and Wales and have been resident for at least 12 months; and be registered as a patient with a GP practice in England or Wales. This clause provides that, in particular, clauses 5 to 22 of the Bill require steps to be taken to establish that the person has a clear, settled and informed wish to end their own life and has made the decision that they wish to end their own life voluntarily and has not been coerced or pressured by any other person in making that decision.
The clause, as amended by the insertion of new subsection (3), will ensure that the service can be accessed only by an individual ordinarily resident in England and Wales. That amendment, amendment 180, has been drafted to give effect to the policy intent of my hon. Friend the Member for Spen Valley for this legislation: that it is to apply only to those in England or Wales and is not to be accessed via medical tourism.
As I have said, the Government remain neutral on the substantive policy questions relevant to how the law in this area would be changed. The clause is a matter for the Committee and Parliament to consider, but the Government’s assessment is that the clause, as amended, is workable, effective and enforceable.
Question put and agreed to.
Clause 1, as amended, ordered to stand part of the Bill.
Clause 2
Terminal illness
I beg to move amendment 399, in clause 2, page 1, line 22, leave out “, disease or medical condition” and insert “or disease”.
This amendment ensures that a terminal illness under the Bill can only be an illness or a disease and not a medical condition.
With this it will be convenient to discuss the following:
Amendment 400, in clause 2, page 2, line 1, leave out “, disease or medical condition” and insert “or disease”.
This amendment is consequential on Amendment 399.
Amendment 401, in clause 2, page 2, line 5, leave out “, disease or medical condition” and insert “or disease”.
This amendment is consequential on Amendment 399.
Amendment 11, in clause 2, page 2, line 7, leave out from beginning to first “of” in line 8 and insert—
“(3) A person is not to be considered to be terminally ill by reason”.
This amendment amends clause 2 to say that a person cannot be considered terminally ill by reason of having mental illness or a disability.
Amendment 181, in clause 2, page 2, line 8, leave out from “ill” to end of line 10 and insert—
“only because they are a person with a disability or mental disorder (or both).
Nothing in this subsection results in a person not being regarded as terminally ill for the purposes of this Act if (disregarding this subsection) the person meets the conditions in paragraphs (a) and (b) of subsection (1).”
This amendment clarifies that the purpose of subsection (3) is to emphasise that only having a disability or mental order does not make a person “terminally ill” and therefore eligible for assistance.
Amendment 283, in clause 2, page 2, line 10, at end insert—
“or one or more comorbidities alongside a mental disorder within the meaning of the Mental Health Act 1983”.
This amendment would set out that a person who has a co-morbidity with one or both of a mental disorder or a disability is not considered terminally ill by virtue of those comorbidities alone.
I said in the last debate that this is either a safeguarding Bill or an autonomy Bill. [Interruption.] Or that it is both, but the claim has been that it is a safeguarding Bill and that there are very strong safeguards. If so, and if we are going to stress the safeguards, as I think we should, that means being very clear about who is eligible. It means having proper, meaningful guardrails showing who is inside and who is outside the scope of the Bill. I suggest that the Bill’s guardrails are not strong, safe or impermeable; they are broken fences. We need to mend those fences in this Committee in order to make the Bill safe.
This group of amendments includes a set in my name that would restrict eligibility to people with terminal diseases or illnesses, and another set that would build stronger safeguards explicitly for disabled people and people with mental disorders. The purpose of the two sets of amendments is the same, but they approach the challenge from opposite ends. I will speak first to the amendments in my name.
Quite simply, I want to remove the words “medical condition” from the definition of terminal illness. The reason for that is straightforward: some medical conditions are likely to also amount to a disability. As Fazilet Hadi, the head of policy at Disability Rights UK, told the Committee in evidence, there is a “huge overlap” between disability and terminal illness. The distinction between the two is notoriously blurred, and there is a reason why no disability rights organisation backs this Bill: it is here in this innocuous phrase “medical condition”. Removing that phrase will provide an additional degree of protection for some disabled people, which I think is a good enough reason to do it.
There is another group of people whom we do not hear from much in these discussions, but about whom we should perhaps be most concerned, because there are so many of them—they are almost all of us. I am talking about the frail. Frailty is an important word in this debate. I refer hon. Members to the briefing submitted in recent days by the British Geriatrics Society; it is a powerful document that highlights an essential challenge for this Bill. What is frailty? Is it a disability? Is it a terminal illness? Is it both? Is it neither? It can be noted on a death certificate as a cause of death and, even if it is not listed as a cause of death—this is a crucial point—it is the most common dying trajectory for people in the UK. More people are frail as they approach the end of life than are not.
I am interested to know where the hon. Member has got the idea that someone is going to scrap the six-month prognosis from.
Well, if the hon. Lady will say that she will never, at any stage, support a proposal to extend it beyond six months, I will be very glad to hear it. My concern is that we already have amendments tabled to do exactly that, which we will be debating shortly. I hope they will be rejected, but my confident expectation, on the basis of other countries, including the Australians who gave evidence to this Committee, is that the six-month safeguard will soon be seen as a barrier to a human right, because there is indeed no logical basis for such an arbitrary date.
The people who currently deal with the six-month prognosis, in the context of benefits and pensions, campaign that it is arbitrary and unworkable—rightly, I think—so I am afraid that I confidently expect the six-month barrier to be challenged in due course. If the hon. Lady is prepared to say that she would never do that, however, I would be very reassured.
Would the hon. Member agree that the purpose of the Committee is to look at the Bill before us? That is why we are here. I understand his concerns, his reservations and his nervousness about what might happen in future, and that is an important conversation to have, but the purpose of the Committee is to look at the Bill as it stands today; that should be the focus of our deliberations.
Yes, but I simply state on the record that I believe that this is not the end, but the beginning of a wider Bill that would follow if we passed this one. I am encouraged by what the hon. Lady says, or implies: that she does not want to go further than this Bill.
My plea to the Committee is straightforward. Let us confine eligibility to the people who the campaigners talk about: those with diseases or illnesses that are genuinely terminal. We can do more to strengthen that definition with later amendments, but, first, we have to remove the gaping hole in the fence that is this term “medical condition”. Let us remove that term.
Marie Curie’s definition of a terminal illness is
“an illness or condition which cannot be cured and is likely to lead to someone’s death”.
It is obviously one of the best-known end of life charities, so how does the hon. Member reconcile the differences he has with its professional expertise?
I am very happy to use the word “condition”—we all use it quite casually, including me—but we are concerned about legislation here. As I explained, if we include the term “medical condition”, courts could interpret that as a development—an addition—to the existing law on terminal illness, which refers only to illness and disease. The courts would be right to conclude that Parliament meant more than illness or disease, which is why it is important to be explicit about what we are talking about: illness or disease.
I think we should remove that term, but if other Members do not, I would like to understand why. The hon. Members for Harrogate and Knaresborough or for Spen Valley might have some suggestions, but I would be grateful if somebody could clarify, explicitly, what is meant by “medical condition” that is not caught by the terms “illness” or “disease”. What are the meanings of the three terms, and why do we have to have “medical condition”? It might well be that there are conditions that would not be captured by “illness” or “disease” that would be appropriate.
On that point, I will quote directly from Chris Whitty’s evidence to the Committee:
“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…death”.––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 32, Q5.]
From my perspective, it is about that “constellation” where death is clearly going to happen as a result of a combination of different conditions, illnesses or diseases. That it is where that is very clear, and, because of the six-month eligibility in the Bill, we have that nailed down. That is the importance of including the term, because it is not one disease that leads to death; it is the constellation of diseases and illnesses that will inexorably lead to death.
I am grateful to the hon. Gentleman. I thought that might be the case too, and I was wondering about that, but I am very concerned about some of the evidence that Professor Whitty gave. I regret that the hon. Member for Spen Valley has removed the role of the chief medical officer from the process that she is designing by introducing the new commissioner, but I will not be sorry to see that particular chief medical officer excluded from the process. He has made significant mistakes; he had to write to the Committee to explain that he had misrepresented the Mental Capacity Act, and, on his evidence, the Committee voted to reject certain amendments.
I am concerned about what Professor Whitty said, but if the reason for including “medical condition” is to reflect the fact that there might be multiple diseases or illnesses that, together, mean that somebody is terminally ill, that is what should be stated in the Bill. It could very well include “a combination of illnesses or diseases that amount to terminal illness”. My concern is about this new concept of a medical condition, which, as I have said, implies something different from a disease or illness.
The Bill would say “the person’s death in consequence of illness or disease”—if we remove “medical condition” —so that would be the qualification or eligibility. If there is a number of illnesses or diseases that amount to a fatal prognosis, that would be captured in the clause, even once we have excluded medical condition, because the singular “illness” or “disease” would, as I understand it from our guidance on statutory interpretation, include the plural. If it is about there being a number of illnesses or diseases that add up to a fatality, the Bill as I propose to amend it would be adequate to the scenario that the hon. Member for Sunderland Central described and that Professor Whitty accounted for. The question is, what is additional illness or disease, or illnesses or diseases, that are captured by the term “medical condition”?
Let me give a quick example. Amyotrophic lateral sclerosis is described as a condition rather than a disease or an illness. ALS is not dissimilar to motor neurone disease, but nevertheless people regard themselves as having a condition rather than a disease.
Again, I am interested in that, because I would be surprised if that condition were not adequately captured by the term “illness” or “disease”. If not, we should seek further clarification, because we need to be very specific. Illness or disease has been adequate; it is adequate in the current law on terminal illness for eligibility for benefits and pensions. I await clarification on what is added by the term “medical condition”, because my concern is that it opens the door to frailty. Going back to Chris Whitty’s evidence, I am concerned at his suggestion that frailty should be an eligible condition for an assisted death.
I will wrap up shortly so that hon. Members have time to speak to other amendments, but I will quickly refer to amendment 181 tabled by the hon. Member for Spen Valley and amendment 11 tabled by my hon. Friend the Member for South Northamptonshire (Sarah Bool), which attempt to do the same thing as my amendments. They seek to protect disabled or mentally ill people, but they do so explicitly by disapplying the provisions of the Bill for those groups, or they attempt to do so. Only amendment 11 actually does, while amendment 181 fails to do so, in my view.
Let us look at subsection (3), which attempts to protect disabled people and those with mental disorders, but which, on closer inspection, is ineffective or even meaningless. In statutory interpretation, the first phrase,
“For the avoidance of doubt.”
indicates that the subsection does not add anything to the Bill except clarity. It is intended not to change the law that is being enacted by the Bill, but to clarify the meaning of the Bill. My point is that it does not add anything—in fact, it signals that the clause can be disregarded. It is like an explanatory note and not actually relevant to the Bill. Its effect therefore negates the point that it tries to make. In including it, the hon. Lady protests too much and exposes the weakness that the clause fails to overcome. It invites a court to disregard the protection it pretends to offer by stating that that protection has no force except what is elsewhere in the Bill.
I agree with the hon. Member to some degree in terms of the legal drafting. I have been advised that the expression “for the avoidance of doubt” is not generally used in a Bill if the Bill is already clear, which this is—I have been reassured by parliamentary counsel about that—but I was keen, having met disabled people and disability rights activists, to have it very clearly in the Bill that by virtue of having a disability, a mental health condition or a mental disorder, someone would not be in scope of the Bill. It was a very clear drafting decision and I stand by that decision; I think it is the right thing to do so that we are clear who is not covered by the Bill.
I am grateful to the hon. Lady; it is helpful to understand her thinking. Her amendment is an attempt to further clarify her purpose, which is to communicate that we cannot have an assisted death only because of a mental disorder or a disability. I know that other colleagues will speak to that point more explicitly.
My point is that
“For the avoidance of doubt”
is a massive signal to the courts that the subsection is meaningless. The advice was right that it is not usual to include that phrase, as it signals that nothing is being added. My concern is that it does not add anything, and the inclusion of the word “only” further demonstrates the hollowness of the protection that it purports to offer. The fact is that someone will still be able to get an assisted death because of a physical illness that derives from a mental disorder or disability. That is my concern with the later parts of the clause, but I will leave other Members to make that point.
There is a lot to talk about in this group and I thank you, Mr Efford, for calling me to speak. I would also like some confirmation about the term “medical condition”, and I agree with the hon. Member for East Wiltshire that we need to absolutely nail that. I am still to be convinced on the question of a condition that does not come under illness or disease but would come under “medical condition”, so I agree that we need to be very clear about what that means.
Frailty is very often diagnosed in older people and I fear that “medical condition” could be equated with that, which would open up the Bill. We need to decide whether we want to do that. Personally, I would not support that in any way. If this is an opening for that, we need to close it, so I agree with the hon. Member in that respect.
Some of the other amendments do not materially add anything to the Bill. On changing “an inevitably” to “a typically”, I do not think that would change the Bill—in fact, I think it would weaken it slightly, so I would not support amendment 123.
Both amendment 11 and amendment 181 talk about how we can exclude mental health issues as a cause for seeking assisted dying. My personal feeling is that the Bill is strong enough as introduced to exclude that. I point people to clause 2(3):
“For the avoidance of doubt, a person is not to be considered to be terminally ill by reason only of the person having one or both of—
(a) a mental disorder, within the meaning of the Mental Health Act 1983;
(b) a disability, within the meaning of section 6 of the Equality Act 2010.”
I think that is pretty tight; I do not think that people with anorexia could be given an assisted death under this legislation. That is my personal view, and I am happy to be persuaded otherwise if the whole Committee thinks we need to tighten up the measure significantly. It is important to make that very clear so that the Bill cannot be amended away from what we wish it to be. I think all of us would say that we do not want patients with anorexia to be able to access assisted dying—I have not spoken to anyone who does not agree—so the question is how we nail it down in the Bill.
I have great sympathy with amendment 11 in particular, which is clearly motivated by a desire to ensure that having a mental illness or disability alone does not qualify someone for an assisted death under the Bill. It is worth saying that clause 2(3) already does that and, therefore, the amendment is not necessary. However, the hon. Member for Spen Valley has tabled amendment 181, which further tightens that language. In my view, amendment 181 strengthens the Bill by simplifying the language to make it absolutely clear that a person is not considered to be terminally ill if they have a mental disorder or a disability alone. The chief medical officer, Professor Whitty, encouraged us to keep this simple, and that is precisely what amendment 181 does. Therefore, I support the amendment.
I rise to speak to amendment 11, which stands in the name of my hon. Friend the Member for South Northamptonshire. This is one of the areas of the Bill where we all agree on what we are trying to achieve, so it comes down to making sure that the drafting does exactly what we all intend in order to protect people.
The definition of “terminal illness” in the Bill has two components. The first is that the person has an inevitably progressive and irreversible condition; the second is that their prognosis is less than six months. An issue raised in our evidence sessions is that there is a risk that a person with a mental disorder or disability will meet that definition if they are suffering physical symptoms that mean that they satisfy both parts of the test; a possible example could be a young woman suffering with severe malnutrition as a consequence of anorexia. With respect to the point that the hon. Member for Stroud made, I agree that anorexia on its own would not qualify, but the issue arises when there is a physical manifestation from that disorder such as severe malnutrition or even diabetes, which can co-occur, as we heard in the evidence sessions.
It is clear that that is not the intention of the hon. Member for Spen Valley or anyone on the Committee, as evidenced by the inclusion of subsection (3). I thank the hon. Member for making that point; it is much welcomed. However, in oral evidence, Chelsea Roff said that
“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.” ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 153, Q194.]
Before I get into amendment 11, which aims to address the issue, it is important to understand what clause 2(3) is trying to do. It reads as follows:
“For the avoidance of doubt, a person is not to be considered to be terminally ill by reason only of the person having one or both”
of a mental disorder or a disability; it refers to the relevant bits of law. As my hon. Friend the Member for East Wiltshire has set out, the words “for the avoidance of doubt” make it clear that this is a clarifying subsection that does not make any change to the rest of clause 2. It appears to be clarifying that mental disorders and disabilities alone will never qualify someone for assisted dying—I think we all concur with that—unless they also have a physical condition that meets the terminal illness test, namely that it is inevitably progressive and irreversible and that the person has a prognosis of less than six months.
This is where the problem lies. If someone has a physical condition arising from their mental illness, such as severe malnutrition resulting from anorexia, and if the physical condition meets the definition of a terminal illness, they will qualify. As the Royal College of Psychiatrists said in its position statement:
“The wording of the Bill could also be interpreted to include those whose sole underlying medical condition is a mental disorder. While anorexia nervosa, for example, does not itself meet the criteria for terminal illness as it is not an ‘inevitably progressive illness, disease or medical condition which cannot be reversed by treatment,’ its physical effects (for example, malnutrition) in severe cases could be deemed by some as a terminal physical illness, even though eating disorders are treatable conditions and recovery is possible even after decades of illness.”
To remedy the issue, amendment 11 would remove the words “For the avoidance of doubt”, to make this a legally effective clause, rather than just a clarifying one. That means that it is providing an additional safeguard to those with mental disorders and/or disabilities. It would also remove the word “only”, to ensure that a physical condition resulting from a mental disorder or a disability will not make a person eligible for assisted dying. The amendment is further bolstered by amendment 283, tabled by the hon. Member for York Central, which would make it clear that comorbidities arising from a mental disorder do not qualify a patient for an assisted death.
I thank the hon. Member for Spen Valley for tabling amendment 181 to try to address the issue, but I do not believe that would quite solve the problem, which is quite a tricky one. “For the avoidance of doubt” would still be there, as would “only”. The sentence beginning with “Nothing in this subsection” makes it crystal clear that if a condition meets the six-month condition and the rest of the definition, it will be considered a terminal illness. There is therefore no exclusion for physical symptoms manifesting from mental illness or disability, which I think is what we are all trying to get to.
In my view, the only amendment that would address the issue is amendment 11, tabled by my hon. Friend the Member for South Northamptonshire. It would remove both “For the avoidance of doubt” and “only”, and would therefore better ensure that a physical condition resulting from mental illness or a disability does not make a person eligible for assisted dying.
Sorry, I mean amendment 11. Thank you, Mr Efford.
I think it will be helpful to spell out what the Bill currently says, and what it would say if amendment 11 were adopted. I will also set why the amendment would provide a much stronger safeguard than amendment 181, which was tabled by my hon. Friend the Member for Spen Valley.
Clause 2(3) states:
“For the avoidance of doubt, a person is not to be considered to be terminally ill by reason only”
—I stress the word “only”—
“of the person having one or both of—
(a) a mental disorder, within the meaning of the Mental Health 1983;
(b) a disability, within the meaning of section 6 of the Equality Act 2010.”
If amendment 11 is agreed to, clause 2(3) will read:
“A person is not to be considered to be terminally ill by reason of the person having one or both of—
(a) a mental disorder, within the meaning of the Mental Health 1983;
(b) a disability, within the meaning of section 6 of the Equality Act 2010.”
That may seem a very small change, but it is an extremely important one.
The Bill, as presented to Parliament on Second Reading, would allow someone to qualify for assisted dying if they had a mental health condition such as anorexia nervosa and a physical condition such as malnutrition. To put it with absolute bluntness, that means that somebody with anorexia nervosa could stop eating until they suffered so badly from malnutrition that two doctors prognose that the patient is likely to die within six months. That person, under the Bill, would then qualify for assisted dying.
This is a really important discussion and I am so glad that we are having it—some brilliant points have been made. As someone who has worked with people with anorexia, I am very aware of the sensitivities of the condition and the issues around it. Would my hon. Friend agree that, as part of this discussion, we have to consider the capacity assessment of people with eating disorders? It is a very serious mental health condition; it would require a lot for somebody with anorexia to pass the capacity threshold for making a decision of this magnitude. It is certainly the sort of instance where I would be very surprised if a doctor did not refer to an eating disorder specialist. Does my hon. Friend agree that we have to look at the condition and how the patient should be cared for holistically?
Order. I remind hon. Members that there are a set of amendments in the next group about anorexia. Let us not go too far down this road.
I absolutely agree with my hon. Friend that there need to be specialists—we will come to that debate later. Let me bring our debate back to the amendment we are discussing. I understand that the Bill is drafted so that people who suffer mental disorders, such as anorexia nervosa, cannot qualify for assisted death—when my hon. Friend the Member for Spen Valley sets that out, I have absolutely no reason to doubt it—but that is not enough to safeguard people with such disorders. As we know, people with anorexia can and have stopped eating until they suffer advanced malnutrition, which is a physical disorder. In some cases, that malnutrition becomes so advanced that doctors will prognose death within six months.
If we wish to protect people with anorexia and other eating disorders, we must rewrite the Bill. We must ensure that people who have those disorders, and who also have a physical disorder, cannot qualify for assisted dying. I must underline that this is not a hypothetical point or some clever objection that has been dreamed up without reference to the real world. It has actually happened—not once, but dozens of times in countries that have assisted dying.
My hon. Friend is making a powerful point. Does she agree that the reporting and data around assisted dying are fundamental? That is why it is important that, if the law is to change in this country, we get that absolutely right. What we propose in the Bill is closest to the laws in Australia, and in my understanding there have been no assisted deaths of people with anorexia in Australia. However, my hon. Friend makes a valid point about the accuracy of reporting; we do not know whether those examples were people with anorexia who happened to have cancer as well. We just do not know, and that is not good enough.
I absolutely agree that if the Bill is to get through Parliament, it has to have those mechanisms and safeguards in place, but I am sure we will come to those later. If we do not know with any reasonable degree of accuracy how many cases there have been worldwide, we cannot say where the majority of such cases have occurred. When we are told that there have been zero assisted deaths of people with anorexia in Australia, I would err on the side of caution—another witness said that there were zero deaths involving coercion.
I understand that my hon. Friend’s amendment 181 also attempts to change clause 2, but the change would still allow people to qualify for an assisted death if they had a mental disorder alongside a physical disorder. I have no doubt that this stems from a compassionate desire not to exclude—for example, someone who has mild depression and a major physical illness—but its effect is to create a major risk for people suffering from both a mental health disorder that affects their eating and a physical disorder caused by not eating. To avoid that risk, the Bill must be much more tightly worded than it was when presented to the House on Second Reading, and it must be much more tightly worded than amendment 181 would make it.
We must make it much harder in the Bill for people to qualify for assisted death by way of having malnutrition caused by an eating disorder. It is a complex problem, and I believe no one amendment will solve it completely. I have submitted two amendments with the aim of making a contribution. Amendment 11 would also make a significant contribution to solving the problem, and I urge all Members to support it.
I turn to amendment 181, tabled by my hon. Friend the Member for Spen Valley. Although the Acts mentioned in clause 2 define mental illness and disability as being taken from the clear medical model, it is not clear if she is further suggesting that a new definition should be used—for instance, the social model. Someone could have a significant impairment under a social model of disability, and for the purposes of the Bill, not consider themselves to be a disabled person. Therefore, they could qualify for an assisted death, thus rendering the provision of no worth.
It is therefore unclear what my hon. Friend is similarly proposing with regard to mental illness. Amendment 11 is needed to provide assurance that if someone does have a mental illness, then it is tightly defined and would preclude them from being able to access an assisted suicide, in case the reason they are seeking it is the mental illness and not the terminal diagnosis. I will speak further on that later.
If amendment 181 was agreed to, the clause would read that a person is not to be considered terminally ill
“only because they are a person with a disability”.
There are two obvious problems with the amendment. First, the amendment removes references to the Equality Act 2010 and the Mental Health Act, which previously defined who did and did not have a disability or a mental health disorder, but having removed those definitions, it does not then define disability or mental disorder in the Bill. What definition will medical practitioners, and indeed applicants, use to determine who does or does not have a disability or mental disorder?
In terms of the removal of references to the Equality Act, I was not aware when the Bill was initially drafted that cancer is actually classed as a disability. Given the fact that in some countries 70% of assisted deaths are for cancer patients, it would seem ridiculous to exclude cancer patients from having the option of assisted death. I hope that goes some way towards explaining that point.
The concepts of a mental disorder and a disability are well understood, and those terms are well used. In the eyes of the law, we would not need to provide a definition of those in the Bill, but the removal of the reference that would include people with cancer is an important thing to do.
The fact that cancer is included in the Equality Act definition does expose a concern about the Bill. It suggests that there is a real connection there, which is of concern. I think the solution is to accept the amendment 11 and ensure that disabled people and those with mental health conditions would not be eligible for assisted dying, and then to introduce a further amendment—either now, as a manuscript amendment, or later—to exclude cancer from the definition. That is a tidying-up exercise that could be done in light of the point that the hon. Member for Spen Valley made about the reference in the Equality Act. The most important thing is that we tighten the clause to protect disabled people.