Terminally Ill Adults (End of Life) Bill (Seventeenth sitting) Debate
Full Debate: Read Full DebateKit Malthouse
Main Page: Kit Malthouse (Conservative - North West Hampshire)Department Debates - View all Kit Malthouse's debates with the Department of Health and Social Care
(1 month ago)
Public Bill CommitteesAlthough these provisions may seem irrelevant to the Bill—I do not think any of us wishes to see the creation of an assisted dying agency—I am nevertheless grateful to my hon. Friend the Member for Runnymede and Weybridge (Dr Spencer) for tabling them. He is playing his usual role of keeping us honest.
It is extraordinary that nowhere does the Bill lay out exactly how the assisted dying service would be delivered—whether it would be an NHS service, a private service or some mix of the two. I am therefore grateful to my hon. Friend for being clear in his suggestion that it should be a non-NHS service and that, if we are to pass this law, we should establish a bespoke agency for the explicit purpose of delivering that service. It is a rather macabre but logical way of delivering on the proposal in the Bill.
The fact is that many doctors, faced with the prospect of being asked to participate in assisted dying, have expressed their preference for it to be delivered outside the NHS. In its written evidence, the British Medical Association, which has been cited a number of times today, says:
“There is nothing in the Bill about how an assisted dying service might be delivered, although the possibility of a separate service is mentioned in the explanatory notes.”
The BMA’s view is that assisted dying
“should not be part of the standard role of doctors or integrated into existing care pathways”.
I stress that point, because it has often been suggested in the course of debate that the way assisted dying will work will be as part of a holistic range of options—pretty indistinguishable from palliative care or other treatment options put before patients. The BMA is clear that assisted dying
“is not something that a doctor can just add to their usual role.”
The Royal College of General Practitioners has also pointed out in evidence that the shape of the service is not set out in the Bill.
On a point of order, Mr Dowd. In his opening sentence, my hon. Friend said that none of us wanted to see the creation of an assisted dying agency. My interpretation of our speaking to a particular amendment is that we have to address what it intends to do in the Bill. My hon. Friend said that he does not want what the amendment intends and that he is speaking more generally about the delivery of the service. Could we have your guidance as to whether that is in order? One of our problems is that we are having very expansive debates, and previous Chairs have sought to keep everyone in order. I am anxious that my hon. Friend does not exhaust himself by straying from the central point in the amendment.
The fact of the matter is that the hon. Member does not have to agree with the amendment, so he is perfectly entitled to speak in that regard.
I am grateful to you, Mr Dowd, and to my right hon. Friend for his concern for my welfare, which is much appreciated. However, he will be relieved to know that I have plenty of energy and can keep going.
To speak seriously, it is very germane to the Bill that the amendments are considered. As I was explaining, GPs and other medical practitioners have been concerned about the absence from the Bill of clauses to specify the delivery of the service, so I am grateful that we have this opportunity to discuss that and to hear from the Minister and the sponsor how they imagine the Bill would operate and whether it would, indeed, be appropriate to establish some kind of agency along the lines proposed. The reason I object to an assisted dying agency is that I object to assisted dying, but I see the logic of the proposal if we are to proceed with the principle of the Bill.
It is extraordinary that this crucial question is not set out. In his evidence to us, Chris Whitty said rather airily that it was for Parliament to decide how the service should be delivered. I would stress that most medics involved, particularly in palliative care and care for people at the end of life, are very hostile personally to the suggestion that they should participate in assisted dying. The BMA’s 2020 survey of its members found that 76% of palliative medicine doctors would be unwilling to participate if assisted dying were legalised. The Royal College of Physicians 2019 members’ poll found that 84% were opposed.
If the right hon. Gentleman wishes to make a point of order, he should feel free to make a point of order.
On a point of order, Mr Dowd. I am grateful to you, and I am sorry to interrupt. I do not mean to be rude, but I cannot see how this is germane to the amendment. We have a lot of amendments to deal with in detail, and expanding the debate into a wider one about whether the medical profession agrees with assisted dying does not seem to me to address the question of whether we should include the amendment in the Bill, which is what we are here to decide.
The right hon. Member is perfectly entitled to express his view, and I respect it. I will make a judgment in due course as to whether the hon. Member is stepping outside the latitude of the issue. He will no doubt bear in mind your intervention and my response to it.
I, too, am grateful, Mr Dowd. I stress that I am discussing the suggestion in the amendment that assisted dying be taken out of the NHS and not be part of the normal pathways doctors are invited to participate in. It strikes me as relevant that most doctors, were the law to be passed, would wish for something along the lines of the amendment to be included.
We do not know exactly how that would work. We know that it could potentially be private, according to the scheme set out in the amendment, or it could be within the NHS. We know from the references in clause 40 that private provision is envisaged, because of the talk of reasonable remuneration for the provision of services. So it would be outside the normal service expectation of medical professionals employed by the NHS; indeed, we know that it could be a lucrative market.
I will speak to amendments 125 and 126, which are linked to new clause 7. Given the discussion we have just had, and given that amendment 341 has been made, I will not push amendment 125 to a vote. Amendment 126, however, provides that any medical practitioner who wishes to provide assistance under the Bill must have opted in to a register or a service for practitioners who are comfortable with providing care related to assisted dying. In other conversations, my hon. Friend the Member for Spen Valley has said that the opt-in model is provided within the Bill. The challenge is that it is not explicit in the Bill, and I would like to see it so.
The BMA wrote in its evidence to the Committee:
“The Bill should be based on an ‘opt-in’ model, so that only those doctors who positively choose to participate are able to do so. Doctors who opt in to provide the service should also be able to choose which parts of the service they are willing to provide (e.g. assessing eligibility and/or prescribing for eligible patients)…An opt-in model is not explicit in the Bill…We urge the Committee to make it explicit in the Bill that this is an opt-in arrangement for doctors.”
The BMA says that it wants it explicit in the Bill, and at the moment it is not. The Royal College of General Practitioners aligned with this viewpoint, stating that an explicit opt-in system is completely necessary in the Bill. It is my hope that members of the Committee will support amendment 126, which I intend to push to a vote.
I am afraid that I will disappoint the hon. Lady by rising to oppose her amendments, although I understand why she has tabled them.
It was clear from the BMA’s evidence that it opposes the creation of a list of registered providers, which the hon. Lady proposes to create with these amendments. The BMA’s opposition and my opposition are based on two or three—
Based on the fact that we agreed on amendment 341, I am prepared not to press amendment 125 to a vote. It is amendment 126 that I am proposing.
I understand that, but amendment 126 also refers to a register of appropriate medical practitioners being maintained. Of course, new clause 7 would similarly create such a list. We are debating all three proposals, so I wanted to explain why I oppose them, as indeed the BMA does.
As has been outlined in previous speeches, the Bill creates an opt-in model effectively, whereby people who want to be the co-ordinating doctor or indeed the second doctor have to opt in and be trained, and therefore become accredited, so by definition they would be approved for that service.
However, the Bill does not envisage that the initial conversation is necessarily with the co-ordinating doctor. There might well be other medical personnel or practitioners—we have talked a lot about semantics in this debate—who are presented with the situation where a desperate person, somebody who has been given some extremely bad news, wants to talk about their situation and what their options might be. We hope and believe that training will spread throughout the NHS to those who want it. Nevertheless, we have to leave open the option that someone may not be accredited and that they may need to pass on someone, by whatever means the Bill determines, to a doctor who is accredited, who can act as the co-ordinating doctor, who has had the appropriate training and opted in, and I am afraid the register would not allow for that.
The second thing that concerns me slightly, and which we need to avoid for the benefit of both the patient and the system, is any kind of “doctor shopping”—the notion that there is a list of doctors that I can shop around and choose from. I worry slightly about that.
My hope is that these types of conversations, which are necessarily private and sensitive, will take place in an environment of embrace and familiarity between doctor and patient. We have talked a bit about whether doctors have to refer or provide information—obviously, we have just accepted an amendment that seeks to set out how that will work. What I would oppose, for two reasons, is the creation of a list that people can move up and down on, and pick somebody they like the look of, or who they think might be handy for them. First, I am not sure that it would be entirely reputable; secondly, we have to remember who we are dealing with here. These are dying people who may not have long left to live—we are talking about six months as a minimum, but actually they might have only two or three months to go. We need to create a sense that this is something that will be provided to them in an environment that is familiar. They will not have to spend their time finding a doctor on a list, and their phone number, then ringing up their office and saying, “This is what I want to do. Can I make an appointment?” There is a privacy aspect to it.
My third objection is, to be honest, about privacy—not just that of the patient, but that of the doctor. The hon. Lady will know that unfortunately—I do not know whether she thinks it is unfortunate, but I do—there are some people who object so strongly, for example, to abortion that they are willing to go and protest outside clinics that provide that service. This House has legislated to balance the rights of those who want to avail themselves of that service and those who want to protest. That has been a source of conflict.
I am afraid that a public list of doctors who provide this service would raise questions about the privacy of doctors, about patient privacy and about access to that service. I am concerned about it from that point of view.
We do not necessarily have specific registers. People are members of professional bodies, and within those professional bodies, people become accredited because of their training. As the Minister referred to earlier, there is no such thing as a list of palliative care specialists; it is not defined in that way. Creating a list in this way would present problems for the privacy of doctor and patient as they go about what I hope we all acknowledge is a very sensitive and private process at the very end of someone’s life. I will conclude at that point and say that, unfortunately, with great respect to the hon. Member for Broxtowe, I oppose these amendments.
I rise to support my amendments in this group, which seek to clarify the details that must be included, under regulations, in the first declaration, and the report that is consequent on that declaration. While I believe it was useful on Second Reading for MPs to be aware of the content of the form that the doctor should complete, the advice I have received—with which I agree—is that the details are more appropriately a matter for regulations. There is always a balance to be struck, but it would not be reasonable to expect the House to have to consider changes in primary legislation simply to alter the contents of a declaration, important though the details are.
The proposed changes go further in a way that I believe should greatly reassure the Committee. As we discussed this morning, they make it clear that a person must have been over the age of 18 when the first discussion under the Bill took place. They also require doctors not just to make formal declarations, but to produce reports covering the eligibility of the person to request assistance, the nature of the assessments they have made, their discussions with that person and, crucially, the person’s understanding of those discussions and of what the process entails. This will ensure that all the relevant discussions have been recorded and understood, and that an account of them has been recorded and will be available for future reference. For reporting purposes, if a person applying for assistance is found not to be eligible, that information will be recorded too. I hope the Committee will agree that further safeguards will be put in place as a result, without imposing additional stress or burdens on terminally ill patients during such a different period.
I rise to speak in support of amendment 184 and to point out that I have now withdrawn amendments 329 to 334, so we will not vote on them later. Like the hon. Member for Spen Valley, I had thought that although it was sensible at Second Reading to have schedules to the Bill that laid out the forms, they were quite limited and strict in their form, so we needed more flexibility and the opportunity for the House, by regulation, to add content to the required forms in the future. I also wanted to insert a declaration by the person that they had had an initial conversation covering all the factors in the Bill and, critically, that they understood the information that had been presented to them. Amendment 184 would do exactly that.
For Members’ reference, I tabled similar amendments that would have done the same with the other schedules. Following conversations with the hon. Member for Spen Valley, I have now withdrawn them all and amalgamated them into amendments that would do the same as those that she has tabled, along with some additional bits and pieces. Amendment 184 is relatively self-explanatory.
I want to speak against amendment 277, which would impose a time limit of 28 days between diagnosis and the first declaration of a terminal illness. In a lot of circumstances, that would be a very difficult time delay for people to face. As the hon. Member for Bradford West, who tabled the amendment, will know, there are already periods of reflection in the Bill, although it also contains provision for a compressed time limit for those who face imminent death. Particularly for those who are unfortunately diagnosed with certain diseases, adding 28 days will insert a delay at a time when people who are facing what they do not want to face—a horrible death—need as much time as they can to get through the process. For example, if we take together all the factors for people who are sadly diagnosed with pancreatic cancer, the median survival is six to 12 months.
I do not know if the hon. Lady knows this, but pancreatic cancer is a particularly unpleasant cancer, not least because it does not exhibit symptoms in its early stages—people do not know they have it until quite late in its development. Treatment for it is not well advanced, and many people diagnosed with pancreatic cancer sometimes have only weeks to live. The idea that we should make them wait 28 days before they can even start the process seems impractical and, I am sorry to say, cruel to them in many ways. It is worth remembering that this is not a six-month “bang, I go and do it.” Most people who have a terminal illness will begin the application process at six months. Once they have the ability to ask for this service, they will then wait until they decide that their life has come to its end, at the time and place of their choosing. That might be at six months, or it might be at six days. The point of the Bill is to put the power to make that decision in their hands. Although the Bill has periods of reflection—it recognises that people need to sit and think about these things—imposing an absolute 28 days on everybody, without accounting for what stage they are at in their disease and how long they have to live, is not necessarily a sensible amendment, and I will oppose it from that point of view.
I understand the objective of my hon. Friend the Member for East Wiltshire in tabling amendments 403 and 404, which are about informing family. I would hope that those are the sorts of discussions that doctors would have—perhaps one of the doctors on the Committee can tell us. On whether we should put that on the face of the Bill, I have been persistent in trying to make sure that the conversation is not guarded. The amendments ask whether I have any family—I am not quite sure what “family” means. Does it mean my children? Maybe I do not want to tell my children. Does it mean my next of kin? I do not know. Is it distant relatives? Is it my whole family? There are problems with the definition of “family”.
While I will not support the amendment, I understand what my hon. Friend was trying to do. I would hope that those are the kinds of sensitive matters that a doctor would tease out of an individual as they look for the various items that we have put in the Bill to make sure that the person is making the decision on a sound basis as a settled view and has the capacity to do so.
I rise to speak to my amendment 277, which would add a new subsection to clause 5. Like my amendment 276, it would alter the time that must elapse between a person receiving a diagnosis of severe illness and their discussion of assisted dying with a medical practitioner. To put the most important point first, the amendment aims to prevent people opting for assisted dying while they are suffering from the initial shock of having a serious illness diagnosed, by imposing a pause. There would have to be 28 days between when a person receives a diagnosis and prognosis of the illness that might end their life within six months, and when they could have their second consultation with a doctor about assisted dying.
The right hon. Member for North West Hampshire asked me whether I was aware of pancreatic cancer. A dear friend of mine, who was known as the “king of curry” in Bradford, told me only in June—the day I launched my election campaign, funnily enough—that he had been diagnosed with terminal cancer. In October, he was gone. I am overly familiar with pancreatic cancer and how fast he went down from being a healthy individual. He is greatly missed in Bradford.
The Committee has already rejected amendment 276. I ask all Members to think again and in particular to consider the evidence given to us by several distinguished doctors, including senior psychiatrists. What those doctors said to us, in both written and spoken evidence, was that immediately after someone receives a diagnosis of serious illness they often experience a major increase in depression and a desire to hasten death. For some patients, that desire to hasten death is what psychiatrists call an increase in suicidality; that is, the patient wants to actively do something to end their own life. For other patients, they do not have an active desire to carry out a physical act to end their life, but they do wish that their life would end sooner.
We can all empathise with people who have just received such a shocking diagnosis and prognosis. They have been told that they are likely to die soon. They may also either have been given information that makes them think their remaining months of life will be degrading and painful, or they may assume that they will be. That might well be how many of us would think if we had such devastating news. But the psychiatrists who gave evidence also said that depression and a desire for death are often not permanent conditions for people who have received such a diagnosis. When a patient gets treatment for their physical symptoms plus social care, and if necessary psychological treatment, the desire to hasten death will often fall.
Let me refer to the evidence of Dr Annabel Price, vice chair of the Royal College of Psychiatrists Liaison Faculty. I appreciate, Mr Dowd, that I am repeating some things I have mentioned previously, but when I spoke previously with reference to this evidence it was to other amendments. Hence, I am having to repeat it for the purpose of this amendment in particular. She said:
“There is a lot of research evidence around depression in people with palliative care needs and people nearing the end of life. We know that depression is common, and across a number of studies it is at around 20%—much more common than in the general population. We know that depression is strongly associated with a wish to hasten death, and that if depression is found and treated in that group of patients, there will be significant change in the wish to hasten death.”
She said that there were a number of factors besides depression that were associated with the wish to hasten death. In those who had received a diagnosis of serious illness, she told us:
“they include difficult symptom experience, poor functional status—needing a lot of help with things—and being socially isolated. Those are really key ones. They also include a sense of loss of dignity and feeling like a burden on others.”
For patients who have all those factors, she said:
“These things can all come together to make life feel very unbearable.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 275, Q359.]
Perhaps the most important part of Dr Price’s evidence was when she said what good medical and social care could do for people who felt their lives were unbearable. She said:
“The evidence that we have from research—this is in populations who would fulfil the criteria in terms of terminal illness—is that the prevalence of depression is around 20%. That is across a number of populations. It is associated with a wish to hasten death. Depression might impact upon that person’s decision making; I am not saying that it absolutely would, but it might. Also, treatment might change their view. We know that there is a strong association, for example, between pain and a wish to hasten death.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 281, Q369.]
On a point of order, Mr Dowd. I am very sorry, but I just want your guidance. The hon. Lady is giving a speech which I am afraid we have covered before. We have had extensive debates on the impact of terminal diagnosis on people’s mental health and depression. I just want your guidance on what the Committee should do to resist the temptation to repeat debates that we have already had extensively, while we are considering these amendments.
I thank the right hon. Gentleman for that point of order. I reiterate the point I have made on a number of occasions. I do not want to interrupt Members when they are making a point, because we are in a very sensitive situation—of that there is no doubt. I exhort Members, when they are discussing these things, to bear in mind those factors and those issues.
Just to be clear, a number of the amendments the Minister mentioned are in my name; I have now withdrawn them, albeit they would not have been voted on until later stages. I have withdrawn them in favour of the amendments tabled by the hon. Member for Spen Valley, which broadly do the same thing.
I thank the right hon. Gentleman for that clarification, because I had heard he was withdrawing but I thought perhaps he meant he would not push him amendments to a vote.
Order. As far as I am aware, they are still on the amendment paper, but let us not get too technical at this particular stage.