Terminally Ill Adults (End of Life) Bill Debate

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Department: Ministry of Justice

Terminally Ill Adults (End of Life) Bill

Lewis Atkinson Excerpts
2nd reading
Friday 29th November 2024

(3 months, 3 weeks ago)

Commons Chamber
Read Full debate Terminally Ill Adults (End of Life) Bill 2024-26 Read Hansard Text Read Debate Ministerial Extracts
Danny Kruger Portrait Danny Kruger
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I will in a moment.

These medics I met in Canada are specialists in assisted death and personally kill hundreds of patients a year in their special clinics. [Interruption.] If hon. Members have difficulty with the language, then I wonder what they are doing here. This is what we are talking about. I met doctors for whom this is their profession and their job, and they are proud to do it.

Lewis Atkinson Portrait Lewis Atkinson (Sunderland Central) (Lab)
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Will the hon. Member give way?

Danny Kruger Portrait Danny Kruger
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I will give way to the other hon. Gentleman.

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Danny Kruger Portrait Danny Kruger
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I am grateful to the hon. Lady, especially for promoting me to the status of doctor; I am actually a charity worker and political hack by background. It is good of her to credit me with those skills—perhaps I should set myself up as a medical practitioner. She is right that medics and indeed judges have to make difficult judgments all the time. I think it would be very dangerous and inappropriate to give them the power to do so in this case.

The whole question of the six-month cut-off is very important. I acknowledge all the points that have been made, but there is another problem with the definition of terminal illness. Almost anybody with a serious illness or disability could fit the definition. I recognise that these are not the cases that the hon. Member for Spen Valley has in mind—of course they are not—but that is the problem with the Bill. All that someone needs to do to qualify for an assisted death—for the definition of terminal illness—is refuse treatment, such as insulin if the person is diabetic. In the case of eating disorders, a topic on which I have worked with the hon. Member for Bath (Wera Hobhouse), a person just needs to refuse food. The evidence from jurisdictions around the world, and our own jurisprudence, shows that that would be enough to qualify someone for an assisted death.

Lewis Atkinson Portrait Lewis Atkinson
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Does the hon. Gentleman accept that every day in the NHS patients refuse treatment, and indeed food, and that there is currently legal oversight in respect of coercion and other such matters? Would the Bill not strengthen protections in those areas?

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Rachael Maskell Portrait Rachael Maskell
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I completely agree with the right hon. Gentleman, who makes a pertinent point. After all, we would never write a prescription before making a diagnosis, yet this Bill does that. It is simply prescribing the wrong medicine. Extraordinarily, there is no critical analysis, not even an impact assessment, when such significant matters of life and death are at stake and when our broken health and justice system would be stretched even further.

My constituent was just 46 when she received a terminal diagnosis. She did not have long; the cancer was advancing and the prognosis would have qualified her for an assisted death. Had it been law, she would have consented. Now 54 and in remission, she pleads that the Bill should not pass. Palliative care consultants say that it is nearly impossible to prognosticate at six months; just 46% get it right. Experts say that the arbitrary six-month threshold is insecure. We must recognise its prematurity. Clause 2(2) says that someone for whom treatment only relieves symptoms but does not cure them would qualify for an assisted death if they were within the criteria. We understand someone declining chemotherapy, but the provision extends to any condition where a cocktail of drugs is sustaining life. The person involved may be only 18. That would not need a change in the law; it is written in the Bill.

My greatest concern is coercion. We live in a coercive society; the UK spends £40 billion on advertising and ever more powerful algorithms drive us to content online. We recognise coercion in relationships or elder abuse, but the Bill fails to safeguard against it when someone is dying and there is malign intent. People often recognise coercion only after years have passed, yet within a month someone could be dead. Malign coercion cases may be few, but as a clinician working at the fringes of life, I heard my patients frequently say, “I don’t want to be a burden,” or “I’d rather the money went to the grandchildren than on my care,” or “Somebody is more deserving than me.”

Intrinsic coercion is very real, not least where the law has changed—rapidly becoming an expectation, verbalised as a duty to die. In fact, not wanting to be a burden is cited as a major reason to opt for an assisted death, alongside loss of dignity, loneliness, and needing personal care, yet every day, disabled people live in this reality. We fight in this House to take away stigma and give dignity, equality and worth. That is why disabled people fear the Bill: it devalues them in a society where they fight to live.

We should understand why Disability Rights UK opposes and why Liberty opposes: to push back against the Bill is the cause of the progressive and the libertarian, not just the domain of the conservative. Under this Bill, a doctor may raise an assisted death with their patient—clause 4(2). Given the trust we place in doctors, not least when people are vulnerable, this is so significantly coercive. Let us suppose there is unconscious bias, which is well known in healthcare. Before people question that assertion, let me cite the industrial application of the Liverpool care pathway, and then, five and a half years after its ban, the covid “Do not actively resuscitate” letters. The evidence shows that disabled and ethnic minority people experience bias in healthcare. Those who stand for equality will recognise the safeguarding failures in the Bill. While not wanting to encourage suicidal ideation, rates are 6% higher in jurisdictions where there is assisted suicide.

On the process, two doctors—possibly unknown to the patient—ask a set of questions. It can take days to establish capacity in the courts, but it only needs a consultation. That is the same for assessing coercion and prognosis. Doctors are proponents of assisted dying. Risk increases in closed environments. At least the Isle of Man is considering a parole board-style approach; this Bill does not. The documentation of the decision fails in its rigour, not even seeking evidence for the decision. It is passed to a judge.

Sir James Munby, former family division president, describes,

“a scheme which does not provide for an open and transparent process but, on the contrary, permits a secret process which can give us no confidence that it will enable the court to identify and prevent possible abuses.”

In decrying how the Bill changes the role of the judge to one of certifying compliance, he states,

“the Leadbeater Bill falls lamentably short of providing adequate safeguards,”

describing the suspension of any appeal as an “extraordinary” omission, not least if the patient’s concerned relative or physician cannot take their case. That is backed by Thomas Teague KC, former chief coroner, who said the safeguards “will not hold” and that they

“amount to nothing more than arbitrary restrictions, with no rational foundation.”

Lord Sumption, former Supreme Court judge, highlights that once the law facilitates assisted suicide, it could be deemed discriminatory to deny others—disabled people—the same right. Barristers say they will take cases. They expect the law to change.

Lewis Atkinson Portrait Lewis Atkinson
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Will my hon. Friend give way?

Rachael Maskell Portrait Rachael Maskell
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I will press on.

Much would rely on regulations using the negative procedure, and some the affirmative. Even if not prepared within two years, clause 42(3) says the Act would be fully implemented. The Bill changes the role of the chief medical officer without any analysis, as is the case for doctors. During the 14-month Health and Social Care Committee inquiry, we heard how the clinician-patient relationship changed with assisted suicide. Record keeping and data collation is inadequate, as we found in Oregon.

Clause 18(9) highlights that the procedure may fail. The Bill is silent on how to manage such cases, but it should be explicit. We must acknowledge that it is not always peaceful. We learned in Oregon that some have seizures or vomit as the body rejects the toxic medication.

The Bill falls woefully short on safeguarding patients, too. It is too flawed to amend. It is a wrong and rushed answer to a complex problem. Today, we must be beyond reasonable doubt of error if voting for the Bill. Remember, the vote is not on the principle of assisted dying or on choice, but the principles detailed within the clauses of the Bill. Polling overwhelmingly says that if Members are in any doubt, the public expect them to vote against the Bill today. We can focus on optimising palliative and end of life medicine to build consensus and to discern what further steps need taking. For death, as with life, is too precious to get this wrong.

Terminally Ill Adults (End of Life) Bill (First sitting) Debate

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Department: Ministry of Justice

Terminally Ill Adults (End of Life) Bill (First sitting)

Lewis Atkinson Excerpts
Danny Kruger Portrait Danny Kruger
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I genuinely do not want to cause any distress or offence to the hon. Member for Spen Valley. I simply am doing my job, which is to represent my genuine concerns about the process that we are deciding on today. I think it is not appropriate to sit private, and I do not believe it is the case that we will have the opportunity to discuss in public the sittings motion. We are deciding that in private, according to her intention. There is not going to be the chance to debate publicly the list of witnesses or the timetable that we are to follow. So be it. If hon. Members in the Committee want to proceed down that line, that is what we will do. I look forward to that discussion, which I am sure we will have courteously, but I encourage hon. Members to vote against the motion.

Lewis Atkinson Portrait Lewis Atkinson (Sunderland Central) (Lab)
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I, like you, Sir Roger, hope that we can spend the next five or six weeks in the spirit of collaboration and that we do not get bogged down in procedural wrangling. We need to work across the Committee to get the best procedure we can.

The hon. Member for East Wiltshire made several points, including the precedent for private Members’ Bills. The relevant point here is that this private Member’s Bill is unique already by the fact that the lead Member, my hon. Friend the Member for Spen Valley, has agreed to take evidence—unlike in any other private Member’s Bill. Therefore, in some cases there may be a need to discuss the sensitivity of individual witnesses’ availability and personal circumstances. We cannot agree as a Committee just by calling witnesses in the abstract. We have to agree—as is outlined by my hon. Friend’s motion and indeed by the alternative motion in the name of the hon. Member for East Wiltshire—for them to attend at a specific time and at a specific place. I gently say to the hon. Gentleman that the Committee would do well to have a conversation in private about the individual availability and suitability of some witnesses.

The motion set out on the amendment paper to sit in private is to consider

“matters related to the sittings motion”,

not the sittings motion itself. My hon. Friend the Member for Spen Valley has clearly indicated that we will return to sit in public for the formal proceedings, which I support. That means that the hon. Member for East Wiltshire and any others who wish to place on record their observations can do so then. In the same way that the hon. Gentleman acknowledges happens in Select Committees and other forums where there is discussion about witnesses, how to call them and so on, I suggest that we spend a little bit of time in private to do so too, before agreeing—I hope with a level of consensus across this Committee—to return in public and to operate in public scrutiny as the hon. Gentleman suggests is appropriate.

I support the motion to sit in private for the consideration of these specific matters in initial discussion and then I support returning to public, as my hon. Friend the Member for Spen Valley has indicated, so that we can be subject to the right public scrutiny for the decisions that we make today.

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Lewis Atkinson Portrait Lewis Atkinson
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I agree with the comments of the hon. Member for Harrogate and Knaresborough. The hon. Member for East Wiltshire said at the start that the purpose of this Committee was not to relitigate the principle of the vote that we had on Second Reading. Yet in his comment just now, he talked about weighing up the numbers in favour or against, which entirely suggests that the issue of witness evidence selection exists in his head and that he is relitigating matters.

I come to the issues around the Australian amendment—amendment (f). Of course the expertise will come from people who are participating in the system. By definition, they are not ethically opposed to it, because if they were opposed to it on the basis of conscience, they would not be participating in the system in Australia. As the Bill makes amply clear, no medical professional or health professional here will be under any obligation to participate in the system here.

Therefore, in order for this Committee to do the serious work of making sure that the Bill is as robust and workable as possible, we need to hear overwhelmingly from people involved in this practice in other jurisdictions, to benefit from their expertise. We do not need to hear from people from other jurisdictions who are, in principle, opposed to this practice. Why would it be appropriate to remove the evidence of a palliative care physician involved in this practice in favour of a head of infectious diseases, whose relevance I do not see because they are not engaged in this practice? That just highlights my point.

I commend my hon. Friend, Kim Leadbeater, for the flexibility she has already shown today in adding names, and for the spirit that she has shown so far. The fact is that all these individuals may give written evidence that we will all consider. I am in favour of us moving on, getting our evidence sessions done and making progress, and dealing with the detail of the Bill, rather than using the selection of witnesses to try to relitigate the Second Reading debate.

None Portrait The Chair
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Order. We are now in formal session, so I gently remind the hon. Gentleman that in formal session we refer to Members by their constituencies and not by their names. I am the only person who uses names, because I can never remember constituencies.

Terminally Ill Adults (End of Life) Bill (Money) Debate

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Department: Department of Health and Social Care

Terminally Ill Adults (End of Life) Bill (Money)

Lewis Atkinson Excerpts
Anna Dixon Portrait Anna Dixon (Shipley) (Lab)
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Colleagues will know that I put forward a reasoned amendment on Second Reading. In that amendment, and in my speech in that debate, I set out some of my concerns about how the private Member’s Bill process does not allow for sufficient scrutiny to develop complex legislation on such a sensitive matter. Indeed, such a once-in-a-generation approach to suicide, death and dying and these changes need to be looked at independently and in a formal public consultation.

This House was given reassurances, both by the promoter of the Bill, my hon. Friend the Member for Spen Valley (Kim Leadbeater), and the Leader of the House, in the light of which some colleagues voted for the Bill on Second Reading to allow the process to proceed. As part of that, reassurances were given about an impact assessment, which would have included an estimate of costs. I am pleased that my hon. Friend the Minister has given assurances that an impact assessment is forthcoming, but we do not yet have it. As a result, we are very unclear at this point how much assisted dying would cost to implement.

I therefore seek clarification from the Minister and others involved on a number of questions. Will assisted dying be offered free on the NHS? How many people do we estimate will expect to exercise their right under the Bill? There are a wide range of estimates out there, based on overseas jurisdictions.

Lewis Atkinson Portrait Lewis Atkinson (Sunderland Central) (Lab)
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Will my hon. Friend give way?

Anna Dixon Portrait Anna Dixon
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No; I have very little time.

How much will it cost for the additional doctors, nurses and other healthcare professionals? How much time will be required to do a proper consultation? What about the lengthy paperwork? Will new clinics be set up, or will existing facilities be repurposed? What will be the costs of the lethal drugs? What about the oversight by the National Institute for Health and Care Excellence and other regulators? What about the training for healthcare professionals involved in the process, and the cost of oversight by the chief medical officer and the Registrar General, and any new data systems required?

It is clear that palliative and end of life care is in desperate need of investment; some 100,000 people die each year who could benefit from end of life care but do not receive it. If assisted dying is to be implemented, it is essential that there is equitable and free access to hospice care, so how much additional funding would be provided to hospices for palliative and end of life care under this money resolution or from elsewhere?

I fully support this Government’s commitment to fixing the NHS, establishing a national care service and providing additional investment, as they have already shown, to hospices. However, I would like the Minister to provide clarification to assist our understanding because, given our inheritance from the Conservative party, I am concerned like others that funding for assisted dying risks diverting essential resources away from end of life care, other NHS services and social care. I look forward to the Minister’s response.

Jim Allister Portrait Jim Allister (North Antrim) (TUV)
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There is no more important function for Members of this House than that of being the guardians of public money. It is very hard to equate the performance of that function with signing a blank cheque, and yet that is what we are being asked to do today. One thing is abundantly clear: if this Bill passes, it will bring with it a huge financial burden in perpetuity.

Lewis Atkinson Portrait Lewis Atkinson
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On that point, will the hon. Gentleman give way?

Jim Allister Portrait Jim Allister
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I would be happy to do so in a moment.

It is quite clear that the measures will impose huge costs on the health and justice budgets. Given the provisions in the Bill, is it impossible for that not to be the consequence, so when the Treasury Minister produces the financial information, will he include current Government expenditure on palliative care and suicide prevention, so that we can look at and balance what we are spending? The Bill invites the Government to move from funding charities to prevent suicide to becoming facilitators and providers of suicide.

Terminally Ill Adults (End of Life) Bill (Second sitting) Debate

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Department: Ministry of Justice

Terminally Ill Adults (End of Life) Bill (Second sitting)

Lewis Atkinson Excerpts
Naz Shah Portrait Naz Shah
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Q I am a former NHS commissioner, Sir Chris. In Bradford West, we have stark health inequalities. Dr Jamilla Hussain, as part of John Wright’s team, will be providing evidence this week. She has found huge mistrust among marginalised ethnic groups—even more so since covid. We know that covid brought to light the inequalities in healthcare access that already existed, especially for economically disadvantaged communities. What lessons do we need to learn from covid and its disproportionate impact on ethnic minority communities when it comes to this Bill in particular and its implementation?

Professor Whitty: That is an absolutely critical question, because it is very important that if the Bill is passed, all parts of society, of whatever ethnicity and of whatever background, have equal access to the Bill—or not, as Parliament determines. That will require adjustment in a variety of ways. Some can be done at a macro level—for example, making sure that everything is translated into the major languages spoken in the United Kingdom—but a lot of it will be to do with the individual interactions that doctors, nurses and other healthcare providers have with individual patients, which must take into account their own starting point, their own knowledge and, most importantly, their own beliefs.

Lewis Atkinson Portrait Lewis Atkinson (Sunderland Central) (Lab)
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Q Sir Chris, you mentioned having time to ensure that people are appropriately trained, and the Bill includes provisions for the Secretary of State to make orders around required training. Could you say a little bit more about that? If Parliament decide to pass an Act of this nature, what training would be helpful and required—in particular around skills, and the assessment of capacity and coercion?

Professor Whitty: I will give my view, and it might be useful to get Duncan’s view on the nursing side, because nurses will often be heavily involved in these discussions.

I would divide the kind of training that is needed into two broad groups: training that is essentially normal medical practice but may need some variation, and things that are clearly specific to this Bill. Issues, for example, around mental capacity—as determined by the Mental Capacity Act 2005—are dealt with every day, in every hospital up and down the country; every doctor and nurse above a certain level of seniority should be able to do that normally. It may require some slight adjustment. There is an absolute expectation within the Act, for example, that the more serious the decision, the greater the level of capacity that someone needs to have. That is already built into the principles of the Act and the way that things are done. I would extend that to the management of end of life, which should be a normal part of medical and nursing practice—we will all die eventually, and that has always been part of medicine, and always should be. That training should be generic, but may need some adaption.

There will then be some specific things that will be necessary for people to understand the legislation, including, in some cases—if this Bill is passed—if they are to take part in the final part of prescribing drugs to patients. It is much more likely that a very large number of doctors and nurses may get involved in the very earliest stages, because someone may raise an issue with their GP, nurse or consultant, who will need to have the basic understanding for that. In my view, the more detailed later stages will require some specific training. I think there will be a gradation of doctors: those who are happy to have the general, initial conversation; those who are happy to have the structured conversation that follows; and a minority who will be happy to go on to take part in the final stages.

It is very important that the wishes of the patient are respected. That is the central point of this. We must start with what is good for someone in their last six months of life, and for their immediate family, but we must also make sure that the wishes of healthcare professionals around this area are absolutely protected, when it comes to conscience and to choice.

Duncan Burton: I am mindful that there are two groups of staff who would potentially be working in this service, if the Bill is passed, but also of the wider workforce. At 2 o’clock in the morning, when a patient wants to have a conversation with somebody about end of life, it is going to be a nurse with them, or a nurse in a care home, or a specialist nurse providing cancer care, so we have to think about the training and support that is required for them, be that around signposting or explaining where they can go to access more information. There is an important part about the entire wider workforce that we need to think about.

Clearly, for those people who are working in such a service, we need to think about the safeguarding elements, and how we make sure there is support through safeguarding training and confidentiality—particularly mindful that some patients may choose not to tell their families about this. We need to think about how we enable and support staff in managing those kinds of circumstances and navigating the legal requirements through the Bill. We need to think ahead about what we need to do in undergraduate training for doctors and nurses, and in the curriculum.

Lewis Atkinson Portrait Lewis Atkinson
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Q I have one follow-up on that. At the moment, we are aware that there are instances across the NHS every day where people make decisions around refusing the treatment that would be required to prolong their life. Doctors, nurses and the healthcare team would be involved in assessing capacity and coercion around those cases. Can you tell me a bit about any learnings from that, about the levels of skill required in the current practice around refusing lifesaving treatment, and about how that might be taken into account in the Bill?

Professor Whitty: You are absolutely right: it is a completely normal part of medical and wider nursing, and other practice, but particularly medical practice, to consider issues of consent and capacity. It can be that someone says they do not want treatment that is clearly going to be lifesaving. A very well-known example is that of Jehovah’s Witnesses, who choose not to have blood products. If they are bleeding heavily, that is an issue that could lead to the end of their life. Provided they understand that and they have capacity, that has to be respected.

The alternative way—the other thing that doctors have to do—is to give people advice before they have major operations, chemotherapy or other drugs that may in themselves lead to the end of their life, but which also may lead to a benefit. Explaining to people the risks and benefits, including the fact that they may lose their life as a result of the next stage—if someone is at high anaesthetic risk, that is not a trivial risk sometimes with operations—is a very standard part of medical practice that you do from the point that you qualify. Obviously, as people get more senior, they tend to be more experienced in it—and, as with most things, if you get more experience, you generally get better at it.

Sarah Olney Portrait Sarah Olney (Richmond Park) (LD)
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Q Professor Whitty, the definition of “terminal illness” is attracting some attention. Some people say it is difficult to define a terminal illness. Would it improve the Bill if we had a specified list of illnesses that would apply? Is it possible to come up with a list of illnesses that are terminal that would qualify under the legislation?

Professor Whitty: If I am honest, I think it would be extremely difficult. If I may, I will explain why, because it is a really important question. Let us take cancer. For the great majority of people with the majority of cancers that are diagnosed tomorrow, the doctor who is seeing them will say, in all confidence, “You have cancer and I expect you to be alive not just next Christmas, but for many years to come.” The fact that they have cancer is not in itself a demonstration that they are going to die. In fact, the majority will not. Almost 80% of people with breast cancer diagnosed tomorrow will still be alive 10 years later, for example.

Equally, there are people who may not have a single disease that is going to lead to the path to death, but they have multiple diseases interacting, so they are highly frail; it is therefore not the one disease that is the cause, but the constellation that is clearly leading them on a path inexorably to a death at some point in the foreseeable future. Exact timings are tricky—we might want to come back to that. I therefore think it is quite difficult to specify that certain diseases are going to cause death and others are not, because in both directions that could be misleading.

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Danny Kruger Portrait Danny Kruger
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Q Very quickly on that last point, it is not totally clear what kind of medical professional would be in attendance at the end. Do you think it should be a fully trained doctor? Should there be some separate professional in that role? How should that work?

Mark Swindells: I am not trying to duck the question, but because we do not take a general view on whether the Bill should pass or not, we have not taken an established view on the delivery mechanism for it.

Lewis Atkinson Portrait Lewis Atkinson
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Q I want to cover two areas. I will start with the current law. I am interested in the position that doctors are currently in, both regulatorily and around the current law. The Suicide Act 1961 and so on clearly prohibit this. A number of us have heard from families who have gone to Switzerland, and so on, and who have returned and had a conversation with their family doctor around the death of a loved one. There have been incidents in which people have attempted to take their own lives, given that there is no current assisted dying provision. Could you say a little about the dilemmas facing doctors on the current law as it stands?

Mark Swindells: We do get inquiries from doctors who are concerned that they are doing the right thing when it might become apparent to them that a patient wants to travel overseas to access assisted dying. We have taken legal advice, and on that basis, we guide doctors that it is permissible for them to provide the existing medical records to that patient, as you might under a subject access request, but to be really cautious about going any further in terms of recommending that or assisting the process more than that. That is based on our understanding of the existing law in the Suicide Act.

Dr Green: Of course, that leads to a further issue. As we heard from Dr Whitty today, this measure may progress at a different speed in Scotland and England and Wales. We also have the Crown dependencies, which are some way further ahead than the mainland Governments on it. That raises an issue for doctors who work in England and Wales but treat patients in the Crown dependencies. We would want clarity about the legal situation regarding a doctor in Liverpool who is treating a patient in the Isle of Man, should the law allow assisted dying in the Isle of Man.

Lewis Atkinson Portrait Lewis Atkinson
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Q Moving on to the next issue, you have both spoken fairly clearly about—or advocated against—having an absolute ban on doctors discussing or raising the issue. I want to tease out whether there is a difference between raising it and recommending it. Dr Green, you suggested that it might be appropriate for a doctor to recommend that someone seeks further information from an independent source, for example. If Parliament so wished, would it be appropriate for Parliament to be clear that no doctor should recommend assisted dying as a course of action?

Dr Green: I do not think I ever suggested that doctors should recommend assisted dying. If I did, I apologise—

Lewis Atkinson Portrait Lewis Atkinson
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Sorry—I meant the provision of information for someone.

Dr Green: The provision of information would be very useful, because in a situation where a doctor was unwilling to have an initial discussion with the patient, it would provide a way for the patient to get that information that was in no way obstructive.

Lewis Atkinson Portrait Lewis Atkinson
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Q I am going to try again. Some people advocate for a ban on this issue being discussed at all, which we have heard your answers on. A different version of that is a ban on any sense that doctors would recommend it as a course of action, in the way that an oncologist, say, might recommend a course of chemotherapy. Could you comment on that as a potential approach to assuage some questions or concerns among the public, and how that would sit in terms of regulation?

Dr Green: We have not taken an official view on doctors recommending it, but I do not think it was ever in any of our minds that doctors would be recommending it as a course of action to patients.

Lewis Atkinson Portrait Lewis Atkinson
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Q So you would be happy if there was an explicit prohibition on recommendation.

Dr Green: I am reluctant to make a statement on that in this forum. We will go away and discuss it, and come back to you.

Naz Shah Portrait Naz Shah
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Q This question applies to both of you. On there being a first doctor and a second doctor, the first doctor is required to determine that the patient has a terminal illness, that they have capacity, and that they are not being coerced or pressured. Again, it is for the second doctor to make sure that the patient has a terminal illness, that they have capacity and, again, that they are not being coerced or pressured. I appreciate that Sir Chris Whitty talked about doctors, and you talked about everybody, being trained in capacity and coercion issues, but those doctors may never have met in the first instance the person who is seeking assisted dying.

The question that worries me is, to be able to fulfil all those actions in all cases, without fear of mis-determining, the two doctors would have to be specialists in all the relevant diseases. For example, if somebody has a brain tumour, lung cancer, or a different type of cancer, would the doctor have to be an expert in that to determine that the person is terminally ill?

From the GMC’s point of view, would we find ourselves in a situation where doctors are working outside their professional competencies and expertise? From the BMA’s point of view, how do we protect doctors from finding themselves having to diagnose life expectancy for a disease they are not a specialist in, or to determine capacity when they are not a specialist in that, or to determine a lack of coercion when they potentially do not know the patient and do not have experience of that? Finally, when the next step is taken and the court has to rely on the testimony of these doctors to protect the patient, can those testimonies safely be relied on by a court and by a judge, given all those concerns?

Mark Swindells: There are quite a few points there—let me work through them backwards. We have some existing guidance for doctors when they act as a witness—for example, in a court setting or a medical legal situation—that talks in general terms about the importance of being an appropriate witness. Inherent to that is some expertise and understanding of the topic they are assisting the court on. I suppose that those sorts of principles would be ones that, if the Bill is passed in this form—I say again, the GMC does not have a view on what the delivery mechanism or the Bill should look like—are applicable points from the guidance, which would read across.

You heard from the chief medical officer his caution with regards to going with a condition-based assessment for this sort of thing. We would not have a particular view on that, but there is one thing that I want to highlight. The Bill talks about specialism in the context and seeking advice from a psychiatrist. On the specialist register held by the GMC, there are five specialisms connected with psychiatry, so some clarity—whether the Bill is intended to cover any, or a particular one, of those—would be good.

I know that it is not restricted in the “independent doctor” and “coordinating doctor” roles in the Bill either, but we are aware that when doctors pursue a specialty, in the sense that they become accredited and go on to our specialist register, that does not fix in time their individual scope of practice or expertise. Many doctors will go into slightly different fields, or focus on one particular area, so one cannot necessarily rely on the specialist register as a current indication of a doctor’s area of competence in that way. On what the precise delivery mechanism is and the point you make about whether either of those two roles of doctor have seen the person, because we have not taken a view on what the law should be, we have not taken a firm view of any process or eligibility, but I note the point.

Dr Green: If I may, I will clarify my previous answer, having had a little more thought. I do not believe that it is ever appropriate for a doctor to recommend that a patient goes through an assisted dying process. My internal thoughts on whether it should be on the face of the Bill, contained in guidance or contained in good medical practice was the point that I was unsure about.

Lewis Atkinson Portrait Lewis Atkinson
- Hansard - -

indicated assent.

Dr Green: With regard to the specific questions, no, I do not believe that a doctor has to be a specialist in the individual disease at stake to advise a patient about prognosis. I can only refer you back to what Dr Whitty said: that in the majority of cases, it is fairly clear—this applies to capacity, too—but in some cases, it is not so clear. What is important is that the doctor has the ability to seek further advice if they need it; it is not always required.

Simon Opher Portrait Dr Opher
- Hansard - - - Excerpts

Q I have a couple of points to make. First, clause 4(5) states that a

“registered medical practitioner who is unwilling”

to go forward with the assisted dying request

“must, if requested…refer…to another registered medical practitioner”.

Are you happy with that clause?

Dr Green: No, we are not, because we know from our survey that some doctors feel very strongly about this. The word “referral”, to a doctor, means writing a letter or communicating with another doctor to see, but some doctors would find themselves not able to do that. For that reason, we believe that there should be an information service for the doctor to direct to. There is a particular problem with the word “referral”. Doctors would not be able to be obstructive; they have the same duties under good medical practice as they do, for example, with termination of pregnancy requests.

Terminally Ill Adults (End of Life) Bill (Third sitting) Debate

Full Debate: Read Full Debate
Department: Ministry of Justice

Terminally Ill Adults (End of Life) Bill (Third sitting)

Lewis Atkinson Excerpts
None Portrait The Chair
- Hansard -

We will come back to that once I get other Members in.

Lewis Atkinson Portrait Lewis Atkinson (Sunderland Central) (Lab)
- Hansard - -

Q Clause 35 introduces a duty on the Secretary of State to report on a periodic basis to Parliament on the accessibility and quality of palliative care. As I understand it, that would be a new duty that we are pioneering. What is your reaction to that? Will it be helpful in continuing the momentum to make improvements to palliative care? Are there any further reporting requirements as part of that assessment—for example, around equity of access, which some have mentioned—that we could think about when considering amendments?

James Sanderson: I welcome the provision in the report. What is necessary is a benchmarking of the current position. Rather than waiting a significant period of time to do a review, we need to benchmark the current state of palliative care and then base subsequent reviews on any changes. As I mentioned before, we also need to look at the wider context. If we look narrowly at the provision of palliative care, we will not properly see what goes on across the whole environment of the health service and social care.

We have mentioned the fact that district nurses and general practitioners are providing a huge amount of palliative end-of-life care, so it may not just be what goes on inside hospices and in palliative care teams in hospitals. I agree that that needs to look at the demographic information so that we are collecting details on who is accessing palliative care and where, and the certain types. All that is necessary as part of the review.

Dr Cox: I agree completely that we need to be doing reviews now and in the future regularly on palliative care aspects. I also think there is an opportunity to write into the Bill other monitoring that would be really helpful in ensuring safety on an ongoing basis. That includes monitoring in terms of decision making—how often assessing doctors refer to others, how often they disagree and what happens after the declaration.

In the Bill there is, as far as I could see, no limit to the delay between the declaration and the request for the substance. That would be an interesting thing to look at in the future, because somebody could delay for six or eight months. Do we do another capacity assessment then? That is a tricky question. What about the taking of a substance? We have not talked about that. There are a lot of things we could look at in future that would be really helpful to monitor.

Lewis Atkinson Portrait Lewis Atkinson
- Hansard - -

Q I think around 650 people with a terminal illness currently take their own lives a year. If we see a success with the Bill, I wonder whether there would be a reduction of that number going forward. Do you think that could be incorporated in monitoring going forward? Do you think there are opportunities to avoid that suffering? People are clearly experiencing traumatic deaths at the moment.

Dr Cox: It is really difficult to know how many people who die by suicide because of their terminal illness would instead access assisted dying, and it is really difficult to understand the impact of assisted dying legislation on that. If we look at the evidence of suicide, we know that it is increased in people with serious illnesses, but it is actually increased in the first six months after diagnosis, not in the last six months of their lives, so it is about the trauma of the diagnosis. What we need for that is better mental health services, better support around diagnosis and earlier palliative care.

The other piece of evidence that I would offer to you is that the global picture of what happens to suicide rates after assisted dying legislation is introduced is confusing and mixed. But there are jurisdictions, for instance Germany, where after the introduction of assisted dying legislation the incidence of suicide has gone up year on year. I do not think we can say that introducing assisted dying legislation will stop those suicides.

Rachel Hopkins Portrait Rachel Hopkins (Luton South and South Bedfordshire) (Lab)
- Hansard - - - Excerpts

Q I want to build on the comments about the multidisciplinary teams that you all work with. The chief medical officer said, in one of the sessions earlier, that discussions about death, dying and end of life are increasing. They are getting better. However, importantly, when we heard from Professor Ranger of the RCN and from the Association of Palliative Care Social Workers, they also talked about the conversations that they have, as part of the wider team. Quite often, it is nurses having those conversations.

I was struck by the way the RCN talked—and you, Dr Clarke, used the word as well—about not being paternalistic, about having the patient at the centre of that conversation, and about ensuring that we listen to the patient and ask them, “What is it that you want?” That, for me, is all about autonomy. Do you agree? The emphasis must be on patient autonomy and their choice at the end of life.

Dr Clarke: One hundred per cent. Sometimes, those of us who work in palliative care almost see the extent to which we try to place the patient at the centre of everything as quite radical, when contrasted with a lot of the other medical specialities. My opinion about what is best for a patient does not matter; their opinion is what counts.

The power of the multidisciplinary team, and the reason for thinking that it may be worth considering amending the Bill so that there is a greater role for a multidisciplinary team, is this: the fact that everybody in that team brings their unique perspective. In my hospital, whenever there is a tricky issue regarding a palliative patient, we will have an MDT. There may be 10 people in the room, all discussing the issues. It might be that someone has decided that they want to withdraw their life-prolonging treatments, or they want to have life-prolonging treatment and, for whatever reason, it is really complicated. We will have the patient, their family, doctors, nurses, social workers and dieticians—a big group of people—in the room because that is the way to make the decision most safely and most effectively, in terms of enabling the patient to have the treatment that they wish to have. It is incredibly important to have that.

--- Later in debate ---
Neil Shastri-Hurst Portrait Dr Shastri-Hurst
- Hansard - - - Excerpts

Q Sir Nicholas, can I bring you in on that? You referred to it directly in your proposed amendment.

Sir Nicholas Mostyn: I did. What particular aspect do you want me to address? The range is quite wide. In relation to the administration of the substance, it is interesting that in Spain, which is now in its second full year of doing this, take-up has been extremely low. There have been only 700 requests, with a quarter denied, and a quarter of the people died prematurely. Three hundred were granted, but of those 300, in 95% of cases the substance was administered by the doctor and auto-administered in only 5%. I am trying to work out why that is, culturally, in Spain. Maybe people go when they are extremely infirm, and that is the reason for it. I am not able to see the moral distinction between having the substance administered and auto-administration. On your question, there are devices that enable somebody who is locked in to end their lives by a blink of the eyelash, aren’t there?

Sir Max Hill: Yes.

Lewis Atkinson Portrait Lewis Atkinson
- Hansard - -

Q We have heard from two witnesses—you, Sir Nicholas, and Dr Ahmedzai from the earlier panel—on the question of judicial oversight. While we have you here, Sir Max and Mr Ruck Keene, what are your observations on the proposals from those two witnesses that an alternative to a High Court judge overseeing the process would be some form of panel or tribunal, potentially multidisciplinary? What is your view on that and the legal implications for that?

Sir Max Hill: I would say two things. First, it bears weight that, looking at all the provisions in the Bill, the additional level of scrutiny currently being called judicial scrutiny or approval is absent in all the comparative examples around the world. That already makes this a tighter pre-legislative model than we see in other countries that have gone down this route. That is worth remembering.

Secondly, while I am not a family lawyer—I was, but a very long time ago—I think that the family division of the High Court would be very well-placed to perform the sort of exercise enshrined in current drafting, which is not a rubber-stamping exercise, but a substantive consideration of heavily objective medical opinion arrived at by not one, but two doctors, one of whom is not the treating doctor.

I listen to and accept the question of pressure on the justice system generally. That is something the Committee will be concerned about because, if the Bill passes, we want something workable. I heed what Sir James Munby said. The sitting judiciary, for good constitutional reasons, is highly unlikely to say anything. But there is therefore merit in looking at clause 12, under the heading, “Court approval”, and performing quite a simple exercise, which for me would be going through subsections (1) to (6) inclusive and, where it says “High Court”, replace that with something else. Personally, I have an aversion to the word “tribunal”, which indicates a right and wrong or some kind of fault-based system—that is not what we are talking about here. But a panel, as Nick said, is the way to go—

Sir Nicholas Mostyn: A panel appointed by the Official Solicitor.

Sir Max Hill: Whether appointed by the Official Solicitor or not. Dare I say it—because I am sitting next to a very distinguished one—I do wonder about the recently retired members of the judiciary and the role that they could play under a replacement panel system.

Sir Nicholas Mostyn: That is what I had in mind—the Official Solicitor looking at the retired judges.

Sir Max Hill: Yes, so there is legal professional capacity among the retired judges—not that they would sit alone on a panel. It would bring with it the extra benefit of having suitably qualified medical professionals, like the Spanish model. So yes, I think that could be done. That is not the same thing as saying that the High Court approval model is fatally flawed and could not be introduced, but I do think there is a viable alternative, which is worth looking at.

Alex Ruck Keene: I have only one observation, and I said this in my written evidence but I also want to say it out loud. You have to think very carefully about what purpose any form of this oversight is actually serving societally, if the oversight panel, whether that be a judge or a panel, cannot decline to approve an application if it considers that the reason the individual is seeking assistance in dying is because of service provision failures by the statutory bodies responsible for meeting their health and social care needs. That is a question of principle, and I want to make sure that that is squarely before you.

Liz Saville Roberts Portrait Liz Saville Roberts (Dwyfor Meirionnydd) (PC)
- Hansard - - - Excerpts

Q I have a question for Alex Ruck Keene. I noticed the concerns in your evidence about presumption of capacity, and I know that you have written in the past about concerns over different disciplines having different definitions of capacity. Later on in your evidence, you also mention multidisciplinary consideration of circumstances in assessing eligibility. How might that multidisciplinary eligibility assessment alleviate some of your concerns in relation to capacity decisions?

Alex Ruck Keene: We have capacity, but we also have to make sure that it is settled, informed and voluntary, and that we do not have things like pressure or influence going on. It is important to make it clear that we are not just saying that this is about all the weight going on capacity. For instance, if you have social workers involved—if you have, say, palliative care social workers involved, assuming it is a palliative care situation—they are going to be far better informed about what options might be out there than a doctor, potentially, depending on the doctor. Social workers more generally might well have more expertise in picking up signs of coercion or influence than a doctor, but I do not necessarily want to get into, “Some disciplines are good at X” and “Some disciplines are good at Y”—I have come across brilliant examples and bad examples in both zones.

It is partly about multidisciplinariness and also about the fact that you have more than one person trying to talk it through. When I train, I always try to tell people that 85% of capacity assessments are not all that difficult —they are just made difficult because you do not have time or you are not listening—but 15% are more difficult. I think a lot of these will be in the 15% zone, and in that zone, the more people you can have thinking about it, so long as they have an agreed framework within which to think, the more reliable, transparent and accountable the outcome is going to be.

--- Later in debate ---
Kit Malthouse Portrait Kit Malthouse
- Hansard - - - Excerpts

I, too, support the amendment proposed by the hon. Member for Spen Valley, and in particular the addition of Jane Monckton-Smith. I have read her book; it is definitely worth a read and is pretty alarming. I will address why I do not think the Committee should support the amendment to the amendment tabled to add other witnesses.

Jane Monckton-Smith has done a huge amount of research in the area, and as well as being an academic who specialises in coercion and femicide—and the impact that coercion has on femicide—she is a former police officer, so has significant frontline experience. As part of her research she will have spoken with and interacted with many of the groups that the hon. Member for Bradford West is proposing to include—although maybe not specifically. I would prefer it if we stuck with the list that the hon. Member for Spen Valley has put forward, and not add the additional witnesses proposed.

Lewis Atkinson Portrait Lewis Atkinson
- Hansard - -

I agree with my hon. Friend the Member for Spen Valley. Having agreed to extend the time on Thursday to hear devolution issues and from the Royal College of General Practitioners and the Royal College of Psychiatrists, by adding two further witnesses, the amendment to the amendment would reduce the time available on those options. In an ideal world we would like to hear from all sorts of people. The option of written evidence is available. We have got other evidence, and I want to ensure that Thursday’s session is focused on the proposals that my hon. Friend has made.

Naz Shah Portrait Naz Shah
- Hansard - - - Excerpts

There is nothing in my amendment that suggests Professor Monckton-Smith is not capable in her expertise. I am asking for other expertise to be brought to the table. Yes, there is the argument that people can submit written evidence—but so could every witness we have heard from today, and that we will hear from tomorrow and the day after. If that is the yardstick, is this just a tokenistic exercise? I would argue that for women in particular, who are the victims of domestic abuse—

Terminally Ill Adults (End of Life) Bill (Fourth sitting) Debate

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Department: Department of Health and Social Care

Terminally Ill Adults (End of Life) Bill (Fourth sitting)

Lewis Atkinson Excerpts
None Portrait The Chair
- Hansard -

I am sorry but we have to move on.

Lewis Atkinson Portrait Lewis Atkinson (Sunderland Central) (Lab)
- Hansard - -

Q Can I be explicit on the palliative care point? We have heard concerns from some in palliative care provision that there is anxiety that if we introduce this in the UK, there is a risk of deterioration in or failure to improve palliative care. Can you address that directly in the light of your experience?

Dr Mewett: I will say one thing briefly. Palliative Care Australia, which is our peak body, commissioned a report a few years back that studied the introduction of voluntary assisted dying legislation throughout the jurisdictions of the world. It concluded—this is a body that was not pro-VAD—that there was no adverse impact on palliative care services; indeed, it was often the contrary. Palliative care services were actually strengthened and enhanced because of the emphasis now being placed on more choices at the end of life. So I think that is an absolute furphy, as we say in Australia—you might say a red herring.

Palliative care services are not in any detriment. In fact, I would go on to say that this idea that palliative care doctors will leave in their droves if such legislation is introduced is just false. We respect conscientious objection in this space, and we have learned to live with each other and respect that people are entitled to set their own ethical limits.

Sojan Joseph Portrait Sojan Joseph (Ashford) (Lab)
- Hansard - - - Excerpts

Q Are you aware of any reported incidents of the misuse of medication that has been administered? As you explained earlier, patients can take the medication to their home.

Dr McLaren: We were made aware of one situation in Queensland last year. The eligible patient was given the medication, but they ended up in hospital and died from their disease. Their husband then went home, took the voluntary assisted dying medication and died. That was obviously a tragedy and no one wants that to occur, so I do not want to be flippant in talking about it, and I hope my comments are taken in the way they are intended.

We know that spousal suicides occur when people die, and we have had one case across Australia compared with thousands of successful cases of voluntary assisted dying conduct. No other cases have been evidenced, so the rate of that is incredibly low. The voluntary assisted dying team in Queensland, on the same day that they became aware of that case, put in steps to ensure that it would not happen again, which I believe included the required return of the medication.

We also have to balance the autonomy of having the medication available to patients at 2 in the morning, when they have an exacerbation of their pain and say that enough is enough, instead of waiting for business hours when the doctors are available to come and sit with them. It is a very delicate balance and there will always be that risk. I think the balance is struck well and the safety can be upheld by still providing the patients access to their own medication.

--- Later in debate ---
Simon Opher Portrait Dr Opher
- Hansard - - - Excerpts

Actually, my question has already been asked.

Chelsea Roff: May I respond briefly? I want to address the question. I know it is not your intention for eating disorders to be included in this Bill, and I am grateful for that. When I started our research, I thought, “We just need stronger safeguards.” That was where I began, and after looking at 33 jurisdictions around the world, I have real doubt about whether safeguards are enough; I know how difficult it is to put it on the page, and I am seeing it expand and be applied through interpretation. I disagree with Professor Shakespeare, respectfully, that diabetes is a reversible condition. You cannot go back in time and reverse that condition.

I agree that you are doing this for a noble purpose, and there are members of my family that want this Bill to go through, and yet I emphasise to all of you on the Committee that the question before you is: could this Bill have knock-on effects for some of your most vulnerable constituents? How many deaths are you okay with? If the safeguards fail once, that is a human being who maybe, in a despairing moment, was handed a lethal medication instead of the care, the treatment and the help they needed. That is what we are talking about. You really have to get this right, because those people are depending on you.

Lewis Atkinson Portrait Lewis Atkinson
- Hansard - -

Q Mr Amin, given your expertise in representing these cases in the court, can I ask you for your view around the Mental Capacity Act issue regarding eating disorders and other disorders? Obviously, we have heard one version of that. Given your experience of working with UK law to the highest level, what is your assessment of this?

Yogi Amin: I have worked in a range of medical treatment cases over many years, covering different illnesses and conditions, and clause 2 reads fine to me. It works. It is clear. I do not consider that it needs any additional words. I can understand, when we go to court, that cases will come through and they will fall within those definitions, and it will be clear. I do not consider anorexia to come under a terminal illness unless it is right at the end of life, and that does not really fit within the parameters of the Bill, because we are not talking about right at the end of life. We have section 63 of the Mental Health Act, which deals with anorexia, and there is force-feeding that clinicians consider. That is my view on the anorexia side of things.

Doctors will provide the evidence on terminal illness. You heard from the chief medical officer yesterday, and they will provide guidance around all of that. Subsequent to the Bill, there will be secondary legislation and then the guidance. They will provide clear guidance that will then feed into this and the evidence that will be before a judge that says, “Yes, it is a terminal illness, and this is the prognosis” and so on. It is nothing different from what we produce in medical treatment cases before the court at the moment, where the doctors produce expert reports and give evidence. They explain the condition, the prognosis and their decision on capacity, and they explain what is in the best interests of an individual if they lack capacity. As I understand it, the Bill is crafted to produce the evidence as you go along the path here, and then eventually to the judge.

Chelsea Roff: May I add one sentence, because it is related to eating disorders? I would refer to a 2012 Court of Protection case, where a 29-year-old with anorexia was described as being in the terminal stage of her illness and multiple physicians described her death as inevitable. I would also refer to a 2023 case seen at the Court of Protection, which said, “I recognise with deep regret that it will probably mean that she will die.” She was also described as being at the “pre-death stage”. Again, that young woman is still alive and still fighting for services. Although I respect what Mr Amin is saying, and I agree with his interpretation, we have case law in the UK where people with anorexia are being found to be terminal. We have to take that reality into account.

Yogi Amin: I do not think they were found to be terminal. They were described by a doctor in a case as being terminal, and that doctor may not have described it properly.

Chelsea Roff: Indeed, but a judge will be relying on doctors.

None Portrait The Chair
- Hansard -

Thank you. This will have to be the last question.

Terminally Ill Adults (End of Life) Bill (Sixth sitting) Debate

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Department: Ministry of Justice

Terminally Ill Adults (End of Life) Bill (Sixth sitting)

Lewis Atkinson Excerpts
Sojan Joseph Portrait Sojan Joseph (Ashford) (Lab)
- Hansard - - - Excerpts

Q Dr Furst, can I ask a follow-up about anorexia? I know that anorexia is not classified as a terminal illness, but long-term starvation can lead to severe physical health conditions, and patients may end up in palliative care. Do you have any experience of those cases in Australia?

Dr Furst: We have experience of those cases in palliative care, but I would still say that they are not eligible for voluntary assisted dying. None of us would feel comfortable, because the condition has to be irreversible. Capacity-wise, you would have to make sure that they had capacity, and I would question whether someone that is anorexic truly has capacity around their illness.

Lewis Atkinson Portrait Lewis Atkinson (Sunderland Central) (Lab)
- Hansard - -

Q Mr Greenwich, we are minded that as well as passing really good legislation we want to get public confidence behind this. We have heard a level of concern from disabled people’s representative bodies about the inadvertent implications of this law for disabled people. Were those concerns shared when you took your legislation through, and how it has gone since the implementation of the legislation?

Alex Greenwich: In New South Wales, and across Australia, having a disability or complex mental health issue like anorexia does not make you eligible at all for voluntary assisted dying. The legislation we are dealing with and you are dealing with is not for people with a disability or anorexia nervosa, and not for people who feel they are a burden. It is for people with a terminal illness who may want the choice of a death that is better than what the illness would otherwise provide.

We worked closely with disability groups in New South Wales. Their main concern was that they would be treated equally in terms of access to the law if a person with a disability had a terminal illness. The key point is that this legislation is a safeguard to those concerns. To the point about people who are starving themselves, that is happening today in the UK because people do not have access to voluntary assisted dying. They are starving themselves to death rather than accessing a regulated scheme where they can discuss all their options and choices.

Jake Richards Portrait Jake Richards (Rother Valley) (Lab)
- Hansard - - - Excerpts

Q This question is probably best for Alex. Yesterday we heard evidence about the health inequalities in our society and fears that they would be exacerbated by the introduction of assisted dying. What was the experience in Australia?

Alex Greenwich: If I think of our health system and how we adopted voluntary assisted dying, like all health systems we were under pressure following the covid pandemic. By legislating in this space you give your health system the priority of dealing with this, making sure doctors are trained to be able to address it and that there is a good implementation period. I believe the Bill has two years, and I think that is completely appropriate to make sure your health system gets up to speed. When it comes to end-of-life choices and healthcare, voluntary assisted dying provides a great deal of honesty and safeguards.

Terminally Ill Adults (End of Life) Bill (Seventh sitting) Debate

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Department: Ministry of Justice

Terminally Ill Adults (End of Life) Bill (Seventh sitting)

Lewis Atkinson Excerpts
Danny Kruger Portrait Danny Kruger (East Wiltshire) (Con)
- Hansard - - - Excerpts

Q Professor Hoyano, what do you think about the indemnity against civil liability in the Bill? Do you think it is appropriate to indemnify all doctors, even if they have made a woefully bad diagnosis, botched a prescription or, in some cases, actually caused some harm? Do you think it is appropriate that they be excluded from civil liability?

Professor Hoyano: I always have a problem when tort liability is ruled out by legislation. I think that the accountability of medical professionals, and indeed all medical practitioners in private practice, lies at the heart of how our national health service works, so I have a difficulty with that. I would have to ask Ms Leadbeater whether this is correct, but perhaps the intention was to ensure that members of the family who, for example, were against assisted dying in principle, would not be able to bring an action that could be vexatious against a doctor who had complied with the legislation and should therefore not be troubled with that type of litigation. It might be that that provision could be refined.

Lewis Atkinson Portrait Lewis Atkinson (Sunderland Central) (Lab)
- Hansard - -

Q Professor Hoyano, the Bill would establish offences relating to coercion, pressure and so on. In the processes set out, there are a number of checkpoints, for want of a better term, at which a person seeking assisted dying may talk to doctors or others. What are your observations on how the criminal construct of offences is linked to the different opportunities for an individual seeking assisted dying to have conversations? In your view, is it likely to lead to the identification of those offences? How does that contrast with some of the considerations at the moment, where people are withdrawing treatment in a life or death situation, for example?

Professor Hoyano: It is interesting that a number of Members of Parliament who are practising physicians pointed out in the debate that they have to evaluate freedom of decision making and absence of coercion in many different medical contexts. I point particularly to the withdrawal of medical treatment at the request of the patient, even if that will inevitably lead to death. It is considered to be a fundamental human right that lies at the heart of medical law that a patient has personal autonomy to decide what to do with their body and whether or not to accept medical treatment, provided that they have the capacity to do so and are acting without coercion from external sources. Doctors have to make those assessments all the time.

I suggest that it is perhaps a convenient fallacy to say that pulling the plug on a respirator or stopping artificial nutrition and hydration is a negative act, whereas giving a patient a syringe to end their own life is a positive act. I realise that with the Tony Bland case it was convenient to say that, but there is no doubt that most people on the street would say that pulling the plug on a respirator is a positive act, and yet doctors and nurses are required to do that every day in the NHS, because that is the patient’s autonomy. If there is any question about either coercion or capacity, the Court of Protection steps in and has the jurisdiction to make those decisions.

The Court of Protection should, I believe, be the court that is supervising this, not the High Court. Three levels of judges sit in the Court of Protection; I suggest that a High Court judge be specified, which would mean a statutory amendment to extend the jurisdiction of the Court of Protection. The Court of Protection makes decisions every day on whether a patient has the mental capacity to make decisions about their own medical treatment. It is accustomed to doing that, and one aspect of that analysis is whether the patient is being coerced externally.

Generally speaking, when a patient says, “I don’t want to be on a respirator any longer; I know I’m going to die,” we do not ask questions. As I understand it, it is not part of the protocol to say, “Are you doing this because you are worried about being a burden on the NHS?”, because their personal autonomy is the overriding principle governing medical decision making in relation to the patient. I hope that that answers your question.

Sojan Joseph Portrait Sojan Joseph (Ashford) (Lab)
- Hansard - - - Excerpts

Q Professor Owen, written evidence from the Royal College of Psychiatrists states that 65% of psychiatrists

“are not confident that consent can act as an adequate safeguard”.

On mental capacity, it says:

“These decisions are opinions with a margin of error and are time specific. A person’s capacity can change”.

What is your view?

Professor Owen: That is important evidence, because it comes from a body of practitioners who are very used to doing mental capacity assessments. I think that the vast majority of that sample were consultant psychiatrists, so the pool, as it were, was one of considerable experience. That conveys questionable confidence in the consent processes, of which mental capacity is part, in relation to the decision to end one’s life. It is significant evidence about the confidence that is out there among experienced practitioners.

It is true that psychiatrists—liaison psychiatrists particularly; I have had experience with this myself, clinically and in relation to Court of Protection matters—will be involved with assessing capacity to make decisions to refuse life-sustaining treatment. Those decisions can be quite vexed and can go to the court, and the court can struggle with them.

An important question for the Committee is the distinction—or the similarity and difference, but I think that there are key differences—between the decision to refuse a treatment that is life-sustaining, of which the Court of Protection does have experience, and the decision to decide to end one’s own life. They are conceptually different decisions. I can outline some of the similarities and the differences now, but it might be helpful to take submissions specifically on that question, because it is very important and I think that there is some confusion about it. If you would find it helpful, the complex life and death decisions group could write a statement to elaborate on some of the issues. In summary, I think that that evidence from the Royal College of Psychiatrists is significant, in terms of the confidence.

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Kim Leadbeater Portrait Kim Leadbeater
- Hansard - - - Excerpts

Q This has been an incredibly helpful panel, so thank you for all your expertise.

Let me come back to the content of the Bill, and to some of your points, Professor Owen. In terms of capacity and coercion, I think we are absolutely having these really important conversations. What concerns me a little bit, though, is whether we are saying we are not confident that two doctors, potentially a psychiatrist and an oncologist, and a judge can make assessments of capacity and coercion between them. What does that mean for things that are happening at the moment? We have talked about the withdrawal of end of life treatment and those things; those assessments must be being done now, all the time, but at the moment there is no legal framework around that. Surely, putting a legal framework around that and having all those multidisciplinary people involved has got to be a positive thing. Professor Hoyano, I would appreciate your thoughts on that.

Professor Hoyano: As I say, whereas I completely respect Professor Owen’s expertise in this as a psychiatrist, for me as a lawyer the question of capacity is a yes or no, necessarily. But capacity is always determined by the Court of Protection in respect of the decision that must be made by the person concerned: do they have the capacity to do it?

When we are talking about a determination of capacity, and also about coercion—which of course is part of capacity in a sense, because capacity is the autonomy of decision making—you are going to be having a very focused inquiry. It is not an inquiry into whether a person has capacity to manage their financial affairs. I probably do not have that capacity, but on something like this I would have capacity. It is important to recognise that it is a yes or no question, which the law has to draw and does draw, depending on the expertise of psychiatrists like Professor Owen, but also forming its own judgment from its own experience, which is why I think the Court of Protection really is the place where this should be.

There is one aspect of the Bill that worries me a lot, and that is the number of people who will be excluded by the provision that the medication must be self-administered. This would mean that Tony Nicklinson, who went all the way to the House of Lords to try to get the right to die, could not have it under this Bill, because he was paralysed. He was a tetraplegic, basically—he was paralysed from the neck down, with limited movement of his head, from a stroke. He lived for seven years with that condition and he would not have been able to self-administer. In fact, when he was denied by the House of Lords—anyone who has seen the Channel 4 programme will have watched him wail in despair—he refused all nutrition and hydration from that point until he died. That was the death he did not want, and I think we need to recognise that there are problems like that. In 2023 in Canada, across the entire country, only five patients opted to self-administer the medication—only five. Even when patients were capable of doing it, they wanted the doctor to do it instead, so let us remember that as well, please.

Dr Ward: Can I make a quick point about self-administration? This is something that in Scotland we looked into in great detail. In Scotland, we chose self-administration specifically because it does not just include ingestion or swallowing. There is a range of ways in which you can self-administer the medication, and I am happy to provide that information to the Committee if that would be helpful.

Lewis Atkinson Portrait Lewis Atkinson
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Q Professor Owen, can I probe a little more something that you raised before—the interaction of potential impairment, potential family dynamics and so on in a way that is not malign, but that you think is a consideration? We have heard some evidence in the course of this week about whether there would be any benefit from a more multidisciplinary approach that could make a more rounded, psychosocial assessment of someone’s situation. That would be less about the clear test of whether there is capacity under the Mental Capacity Act and more about the wider considerations of those interactions. I just wonder whether the inclusion of, say, social workers or mental health professionals as part of a multidisciplinary approach would give you any reassurance on those points that you made.

Professor Owen: Good question. On the point about that interaction issue, it is not just me picking it up; it is the courts and the Court of Protection particularly. If you are interested, it is footnote (11) in the written submission from the Complex Life and Death Decisions group. The point that you make is well taken from my point of view. You have two doctors, essentially, doing the assessment. Some doctors can be very good at assessing social circumstances; some are not so good. I think it would be preferable to try to get a law that gets sight of social circumstances; one way of doing that may be to insert a requirement that a suitably experienced social worker is involved, so that there is some sensitivity to those contextual, relational, interpersonal effects, which, as I know you are aware, can be very subtle. A lot of these things are extremely difficult to pick up. They are easy to miss and, even when you are aware of them, there can be dilemmas about what to do with them.

Professor Hoyano: Might I add a postscript to that? A model that we could consider in this context is CAFCASS—the Children and Family Court Advisory and Support Service—in the family courts. It is a body of experts—civil servants, in effect—but they are independent and they are accustomed to dealing with specific context with social workers, for example. They investigate what should happen to a child in public law or private law proceedings. It occurs to me that something like that—a report from an equivalent body to the solicitor’s office, which I mentioned before—could be a very good way of building that in, because I completely agree that social workers are likely to be more professionally attuned, by virtue of their training and experience, to looking at the wider context.

None Portrait The Chair
- Hansard -

We have two more minutes for questions and answers.

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Neil Shastri-Hurst Portrait Dr Shastri-Hurst
- Hansard - - - Excerpts

Q Professor Preston, in your written submission, you effectively propose reversing the presumption of capacity that is set out in the Mental Capacity Act. Could you go into a little more detail about that and the reasons behind that proposal?

Professor Preston: The submission was with my colleague, Professor Suzanne Ost, who is a professor of law, and that very much came from Suzanne.

I think the aim is to have that bit of extra concern, so that we do not presume capacity, but instead almost presume that there is not capacity. It would be a bit like if you go to A&E with a child and they have a fracture. The presumption there is to ask, “How did this happen?” and “Do we need to rule anything out?”, rather than just assuming “Well, they have just fallen over” and that things are exactly as said. There is an element of that, where we are not presuming capacity, but are actually going into it and switching it around within the training to ask, “Do they have capacity?”. I think that would be a change within the Mental Capacity Act.

Lewis Atkinson Portrait Lewis Atkinson
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Q Dr Richards, in the light of your research, could you say a little bit more about the weight that individuals dying place on the importance of autonomy and how that is weighed up against other considerations around safeguarding and so on?

Dr Richards: There are two things that I would like to say about this. The first is that it is individually specific, which probably will not come as a shock to you. The evidence shows that the people who request assisted dying are people who have a particular preference for control in their life, and they have had this preference across their life, so it is part of their identity. In that sense, it is a personal preference as opposed to a deficit in palliative care, which is what we hear a lot about.

The second thing is that, with regards to autonomy, proponents of assisted dying are very keen to emphasise that this is an autonomous decision, which it is, and would have to be by virtue of the law. However, that does not mean that families, loved ones and close social relations are not really embedded in that decision making. It is important to think of autonomy as relational rather than as an isolated making a decision not in relation to others. It is also important to think about the impacts on the family when you are thinking about the guidelines that would go along with any legislation.

Danny Kruger Portrait Danny Kruger
- Hansard - - - Excerpts

Q This is a question for Claire Williams. It was interesting that you said you were not aware of what drugs might be used in assisted dying. We obviously do not yet know what will be proposed here if we pass this law. There are lots of different combinations of drugs used in other jurisdictions, and we do not know much about them. I think that is fair to say.

What we do know is that there is a combination. In two thirds of deaths in Belgium, I think, and in the United States, where I have visited, the first drug that is used is an anaesthetic, and then there is a paralysing agent. A paralytic drug is introduced, which often gives the impression that the patient is having a peaceful death, but we do not actually know what is going on beneath the surface. I am afraid to say that, from studies into people who have been on death row who have been legally executed, there is often evidence of brain trauma. Can you speak to this at all? We know that in a minority of cases real complications occur—it often takes a very long time for the patient to die, and there is vomiting and all sorts of distress. How can we improve what we know about the actual process of dying, and how can we reduce these terrible complications?

Claire Williams: I can only apologise, because I am here to give evidence about a model for collective decision making rather than about my experience with regard to these drugs. As you say, the potential side effects and prolonged deaths are something we will need to consider for these cases. We need to take evidence from other countries that have had this experiences. Apologies, but I cannot comment on this particular aspect.

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Danny Kruger Portrait Danny Kruger
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Q Professor Preston, I wonder what you think about this idea of a panel instead of the High Court judge. A lot of Members who voted for the Bill on Second Reading did so partly on the basis that there would be that judicial stage. Although we can all recognise the value of having more expertise involved, the role of the judge is essentially adversarial in principle, and the public would expect it to be. They would be hearing arguments and taking evidence. Do you think that the Bill would be safe without that? Secondly, do you not agree that, as we heard earlier from a law professor, the right of appeal should be in both directions? There should be the right of appeal against an approval as well as against a denial?

Professor Preston: I think we suggested a panel. I submitted some evidence after the last Select Committee inquiry about a panel that could operate outside. Lots of the reasons I gave were about helping to navigate, helping to identify doctors and helping to support people who feel vulnerable within the NHS.

What increasingly came out from the idea of a judge is the question of what exactly their role is and the fact that there is no right of appeal. However, if you had a panel, that would give a much more thorough understanding of what is happening. The additional safeguard is that the panel could say there needs to be a palliative care consultation. You would have to be sure the doctors who are doing it are, based on their register, qualified to have a palliative care conversation so that all options have been explored.

My fear is about if we do not specify what training is or what these people’s expertise is. Most doctors do not know too much about palliative care or what the options are. You do not need to see a palliative care doctor, as a palliative care nurse can talk you through it, but the additional power of that panel is that it could be answerable to the court or some other sort of assisted dying tribunal.

Lewis Atkinson Portrait Lewis Atkinson
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Q I have a question for Dr Richards. I note from your biography that you have done work studying the phenomenon of old age rational suicide. I noted your comments before about research suggesting that people who seek assisted death have got particular, strong preferences for control and agency at the end of life. We know there are around 650 people with terminal illnesses who take their own lives every year at the moment. I wonder, particularly given your work on old age suicide, what would be your assessment on how assisted dying becoming an option here in the UK might affect those statistics.

Dr Richards: The Bill covers terminal illness only. It includes people with six months left to live, so it would not include the phenomenon of old age rational suicide, which is where you want to end your own life for reasons of the accumulated losses of old age, or because you feel you have lived a completed life. This really relates to people who are in what is called the fourth age of life. It is a social and cultural phenomenon that there are people in the fourth age of life who want to wrap things up on their own terms, but this is a separate phenomenon to people who are in a natural dying phase of life and want to accelerate that. It is different.

After you legalise assisted dying for terminally ill people, you will still get older people taking their own life. The highest demographic for completed suicides is people over the age of 70. It is a phenomenon around the world, but it is a qualitatively different phenomenon to people in a natural dying phase. If we look at the data on who requests assisted dying, it is people who want control and agency, and they may even have thought about it as a mode of dying that they want to access before they even had a terminal illness. They might have always imagined that, but that is in conjunction with various forms of suffering that they will be experiencing. It is not just personal preference; they are also suffering, and suffering is very multi-faceted and multi-dimensional at end of life. It has various different components, not just physical.

None Portrait The Chair
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Before we move to the next panel, is there anyone else who has pressing questions, or would you prefer to have a five-minute comfort break?

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Tom Gordon Portrait Tom Gordon
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Q Thank you all for coming here and sharing your personal experiences. I think it really adds to this, and it is why we are all here. My question is about access, which is one of the conversations surrounding the Bill, and how, if we do not legislate now, we might not see another debate or Bill brought forward for potentially a decade or longer. What are your views on that? I think some people see it as a point from which we either will progress or will not. Do you feel that this needs to be a continuing conversation, particularly with regard to palliative care and the experiences that your loved ones might have had in that system?

Liz Reed: As I said, my brother died in a hospice in Australia, where the hospices are extremely well funded, and the care he received was sensational. The team and the staff in that hospice made the time he had in there. Obviously, it was not amazing, because he was dying, but for a really difficult situation, it was comfortable for his family, and he had young children. You could not fault the care and access to the medication. We as a family, after he died, went back to the hospice to say, “This was changing for us and for him.”

But it did not change what was happening to my brother. He went from a hospital to a hospice, and he had a date planned for his death. He then actually changed his mind and extended it, because it was better than being in a hospital and the hospice care was great, but he still landed at the same point of saying, “This is not living.” It was not what he wanted, and not what he wanted. From a personal perspective, when he was diagnosed, we said, “You’ve got to come home.” But actually, I think, “Oh my God, what would have happened to him? How long would he have had to go on? How long would his children have had to watch him?” He was only 39 and his children were young, and they did not have to—they still remember their dad. For him, for his wife and for our family, I would not change anything.

Lewis Atkinson Portrait Lewis Atkinson
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Q Pat, if the Bill, as it is currently drafted, had been in place in your family’s situation, what difference would that have made to your family’s experience?

Pat Malone: In all three cases, it would have improved their lives and their deaths. My father died at the age of 85 from pancreatic cancer. He asked me to help him kill himself while he was in hospital in the last three or four weeks of his life. Obviously, I was not able to do so. He suggested that I put poison in his water, which I had no idea how to action. I spoke to his consultant and asked whether he could do anything to hasten his end, and he said, “No, no, no, I can’t.” After that, he lasted another three weeks and he had a horrendous death. It has scarred our family to this day.

My brother contracted the same disease, pancreatic cancer, and having seen my father die, he—having gone to six doctors and asked them whether they could help him end his life; he was under home hospice palliative care at that time—contrived his own suicide. Unfortunately, he asked his wife to sit and hold his hand while he died, as a result of which there was a police investigation into collusion. She and her daughter, who was also in the house at the time, were not cleared for eight months, during which they were interviewed repeatedly about anomalies and what they did or did not know. It was absolutely unconscionable to pile that on top of their grief, at a time when they had just lost their father and husband.

My sister’s death, having seen those two deaths, was much easier. She got motor neurone disease and was not really suffering in the way that my father and brother had been. She knew that her end was going to be as a live brain in a dead body, and that was the horror that she faced. From the beginning, she was fixed on going to Dignitas, which she did. It was not easy because, after the example of my brother’s family, she would not allow anybody in her family to have anything to do with the arrangements that she had to make, which were quite complicated and became ever more difficult for her. First, she could not drive a car any more and was going around on a mobility scooter, gathering endless documents and having all the tests that you need to have. Ultimately, she said, “This is my golden ticket.” When she was accepted by Dignitas, she said that it was the greatest relief of her life. She said, “I know I am not going to get cancer or dementia. I’m going to die painlessly at a time and place of my choosing.”

That is exactly what she did, but she died 1,000 miles from home. She should have died in her house with her family, and her dogs on the bed. She should not have been denied that. Had this Bill been enacted in her time, it would have been a much easier operation. The problem with this legislation mainly is that it is so long overdue. There are people now who are in that position. You may think our family is star crossed because we have had three deaths like that, but I think we are just a normal family. It is happening all the time. Chris Whitty talked on Monday about how we should not rush into this. We are not rushing into it; we are at the back of the queue, really.

Rachel Hopkins Portrait Rachel Hopkins
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Q Thank you all for sharing your family stories today. It is really moving. Julie, I want to ask about your experience in Spain and how you found that particular process in comparison with what we have in the Bill. How did it work? What was positive or difficult for you?

Julie Thienpont: Guido had decided right from the word go, even before he got sick, that that was the way he would want to end his life, if there was a possibility of it. He was from Belgium originally, so he expressed a wish that if ever he needed it, he would like to go back there.

The law in Spain is very similar to the Bill, which I have read through countless times. There are a lot of similarities. There were very rigorous checks. It involved much paperwork, counselling and family liaison. The difference was that it went before a board, so it was a panel that would allow or not allow the decision—it was not decided in a court. That would be the main difference, but the process was rigorous. It was slightly difficult for me, because although I can speak Spanish, the terminology was frequently more difficult, so they very kindly translated for me. They explained everything: what would happen and how it would happen, if it happened. It was a big celebration for Guy when he was actually granted this. They also told us that he could change his mind after he had made the decision, should he wish to. He did once. It was me who asked him to do that, because I did not feel he was sick enough, which sounds a bit silly, I know.

He was an intensely private person. The palliative care in the part of Spain where we were is excellent, but it was quite irrelevant for him because he had already expressed that he wanted to die at home. We lived up a mountain; we were quite remote. Being such a private person, he never wanted to be in a situation where somebody else had to see him in any vulnerable situations, especially with personal hygiene and so on—even me, although I was able to help him in many ways. I had to do a lot of procedures for him, after being trained to do so, but he was more than happy with the situation of having assisted dying once it was granted. He did not need any other sort of care, although we still had a nurse coming every few days and the family doctor came up at least once a week. That does not sound much, but he did not want her any more often than that.

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None Portrait The Chair
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Order. I am going to let you continue, but that question is out of scope. Is there anything else you want to say, Mr Malone?

Pat Malone: I have said that as far as meddling with the Bill is concerned, I would like to see it pass as it is without too much delay.

Lewis Atkinson Portrait Lewis Atkinson
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Q I have a question for Mr Malone. The Bill as drafted talks about the commencement period and how quickly it would commence in the UK if Parliament passed it. There have been some suggestions that we should delay the commencement in order for improvements to palliative care or other such things to be made. Could you speak to your experience on that and give your opinion?

Pat Malone: I think that both my sister and brother had more than adequate palliative care. My sister, particularly—she was taken under the wing of the Macmillan nurses, even though she did not have cancer, and they were absolutely marvellous. Her GP was brilliant as well: behind her all the way for the whole year. She could not really have done it without her.

The NHS was excellent. In fact, my sister was used as a diagnostic tool, or diagnostic test, by NHS surgeons who were teaching medical students. She would be put in front of medical students and they would be asked what was wrong with her. Given that MND is normally associated with young men with brain trauma and so forth, it encouraged them to widen their appreciation of these diseases. It meant that she met NHS specialists at a particular level. She really wanted for nothing. She had a stairlift put in her house in short order. She had the mobility scooters and all the gimcracks that you have in your bathroom to help you get out of the bath and so forth. Above all, from the Macmillan nurses in Blyth, she had moral support. These are no-nonsense people who will walk through a wall if there is something that you need, and that is wonderful to have.

So there was no palliative care issue with my sister. She never needed any pain control. She had everything she needed. It did not change her mind one bit. I would like to see palliative care divorced from the idea of assisted dying. What she needed was assistance to die. What my brother needed was assistance to die. Palliative care was a side issue. It obviously comes into it, but if you could look at assisted dying on its own, I think that would be useful.

None Portrait The Chair
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Are there any more questions?

Julie Thienpont: Would it be okay if I said something?

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Naz Shah Portrait Naz Shah
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Q My question is to Dr Price. We heard yesterday from Professor House and this afternoon from Professor Owen, who were talking about capacity and coercion. They also talked about how different people’s life experiences impact their ability and their state of mind, and the lack of research or evidence in that area—the courts are grappling with those issues at the moment. Is there any evidence about the effect on patients’ mental health when they have a diagnosis of a terminal or serious physical illness?

Dr Price: 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.

There are a number of associations other than depression with a wish to hasten death, and 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. These things can all come together to make life feel very unbearable. We know that there is also an overlap between a wish to hasten death, which is a response to suffering, and feeling that one is better off dead, ending one’s own life or harming oneself. I was involved in a study where we asked people both the wording of “a wish to hasten death” and the suicide question from the PHQ9, which is a depression screening tool. Those who had a wish to hasten death were 18 times more likely to also feel suicidal, according to the psychiatric definition, than people who did not have a wish to hasten death. There is a strong association.

Lewis Atkinson Portrait Lewis Atkinson
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Q My question is for Dr Price as well, please. We heard in the week from the chief medical officer earlier, who said that he was “relieved” that this Act based capacity on the Mental Capacity Act, noting that it already provides that

“the more serious the decision, the greater the level of capacity”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 30, Q3.]

and that it is used in tens, if not hundreds, of life and death cases in the NHS every week. The example he gave was someone refusing blood products that they would need to continue their life. In the light of that, I suppose I am a bit confused about your evidence saying that the MCA is not suitable for life or death decisions of this type. Do you think the MCA is not fit for purpose for those current life or death decisions that are being made, or is there something about the life or death decisions that would be made in an assisted dying context that makes that different?

Dr Price: The assumption that the Mental Capacity Act can translate neatly into this specific decision without a really clear sense of what that would look like in clinical practice is something that needs more careful thought.

I was involved in research in this area, and one of the things that I did was to scrutinise the concept of capacity as discussed in a number of forums—for example, the Commission on Assisted Dying, discussions in the House of Lords, and also interviews with doctors in England and Wales and in Oregon. There is a broad sense of what capacity is. For some, it is a very tight, cognitive definition that would mean that in practice, in assisted dying, most people would be found to be capacitous. Those who advocate a much broader sense of what capacity is—these can be contained within the framework of the Mental Capacity Act—would advocate a much broader sense of what that is, thinking about values and the person’s life experience and making more judgments, really, about that person’s life in a general sense.

What I do not think we have really pinned down is what concept of capacity is operating in the thoughts behind this Bill. Is it enough to say that we will essentially refer to the Mental Capacity Act, or do we need to be more specific about what is capacity for this decision? Is it sufficient to say, “We will refer out”, or do we need it on the face of the Bill so that anybody assessing capacity for this decision knows exactly what they should be doing and exactly how they should be having that conversation? Even though you may be operating within a legal framework, I think that the actual conversation —the actual content—will vary across practitioners. Is that good enough? Is that sufficient? Is that a good enough standard? When I do a capacity assessment, I have in mind that it may be appealed against—that is somebody’s right—and it should be available for scrutiny by a court. Essentially, that is the standard we are looking for, so it needs to be clear where the standard lies.

Kit Malthouse Portrait Kit Malthouse
- Hansard - - - Excerpts

Q I also want to explore this issue of capacity a little further with Dr Price, because I share my colleague’s slight confusion.

You talked about a percentage who wish to hasten death. The people we are talking about are facing death in any event within a foreseeable period, and they may be contemplating a death that is not pleasant. Some of the characteristics you talked about are presumably to be expected and may not necessarily interfere with their ability to make rational decisions in what they believe is their own best interest. In those circumstances, I do not understand why the Mental Capacity Act would not apply. I understand that you may be coming at it from a practitioner point of view, but if I make a decision to decline treatment to hasten my own death, I am not sure I would necessarily see that as qualitatively different, from the point of view of my own capacity, from saying, “I know I am going to die in three months’ time and I would like you to assist me to die slightly earlier.” Why are the two qualitatively different, from an MCA point of view? At the moment, one would be dealt with through the MCA, but you are saying the second would not necessarily be.

Dr Price: You are equating a refusal of treatment, in capacity terms, to hastening death by assisted dying. If those two things are equated, in terms of the gravity and the quality of the decision, the Mental Capacity Act may well be sufficient, but there are differences. There are differences in the information that the person would need and what they would need to understand. They would need to be able to understand the impact of the substance they are taking and what the likely positives and negatives of that are—all of those things.

The informed consent process is different from a refusal of treatment, and the informed consent process feeds into the capacity assessment. This is an area where we need to think carefully about whether the processes of the Mental Capacity Act, as it stands, map neatly enough on to that decision to make it workable.

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Marie Tidball Portrait Dr Tidball
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Q Dan, I am really keen that we ensure that if the Bill passes, the voices of disabled people are continually involved in understanding its impact, particularly on the issue that you have just raised. Earlier, we heard evidence about implementation taskforces that are used in other jurisdictions. I am considering tabling an amendment on an advisory council. How might we ensure that the voices of people with learning disabilities can be included in such a body?

Dan Scorer: There are a couple of things that I would like to say in response. One is about clause 31, on guidance from chief medical officers. Immediately, I would say that people with a learning disability should be involved in the development of that guidance from chief medical officers. That guidance will be key to many of the issues that we have discussed.

Clause 35 is about the review of the Act. The lived experience of people is absolutely vital to that. The Bill says that it will be five years until we have that review. Our view is that that is far too long. If the Bill becomes law and if there are really serious issues and discrimination taking place against people, we will want to know that a lot earlier than in five years’ time, and we will want action to be taken. Our suggestion is that review should be earlier. We would want to see strong representation from patient groups across that, as well as from people who have been involved in the process, such as family members, advocates and clinicians, to make sure that if serious issues are being raised, they can be picked up early and addressed.

Lewis Atkinson Portrait Lewis Atkinson
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Q It is late, and I am far from being an expert on Welsh devolution, but I want to ask Professor Lewis a question, not least because we have not come to him for a little while.

Although it is not my area, I absolutely note the concerns and the discussion about respecting the democratic will of the Senedd in these matters. Would you suggest any potential avenues in the Bill to incorporate an element of positive affirmation by the Senedd, or its consent? What do you suggest we look at?

Professor Lewis: Formally, there is a need in any event for a legislative consent motion in relation to the specific bits I mentioned earlier, I have suggested one potential avenue, which is that the Senedd and Welsh Government take on responsibility for whether and when the Act commences in Wales. Another option might be to do a thorough “think once, think twice, think Wales” review to see to what extent other functions of the Secretary of State might be better exercised in Wales by the Welsh Ministers. That is a non-exhaustive list, but I hope it helps.

Naz Shah Portrait Naz Shah
- Hansard - - - Excerpts

Q Dr Price, you talked in your earlier evidence about depression. One Committee member suggested that 20% of people were on antidepressants; actually, the factual position is that 10% to 11% of the adults in this country are on antidepressant medication, according to the latest statistics. To be clear, are you saying that people who are depressed are more likely to ask for or go down the road of assisted dying?

Dr Price: 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. Unresolved physical symptoms make people want to die, and when that pain is better, people no longer feel that way.

That is borne out in my clinical practice. We will get urgent referrals to see somebody who wants to die and who they are very concerned about. Then the pain is under control: we see them that day or the next day and they say, “Do you know what? The pain’s better. I don’t feel like that any more.” When we think about symptoms, we need to think carefully about what is treatable and what is remediable. That may be about psychiatric interventions, but it is often about a biological, psychological and social approach.

Terminally Ill Adults (End of Life) Bill (Eighth sitting) Debate

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Department: Ministry of Justice

Terminally Ill Adults (End of Life) Bill (Eighth sitting)

Lewis Atkinson Excerpts
I will quickly observe the point made by witnesses about what is called fluctuating capacity, which is inherent in certain conditions, particularly dementia. The point about a decision for an assisted death is that, once someone has made it, they cannot unmake it. By the way, that is a key distinction between requesting an assisted death and declining treatment: one can always go back on a decision to decline treatment, but not on a decision to have an assisted death. Capacity fluctuates, particularly with dementia.
Lewis Atkinson Portrait Lewis Atkinson (Sunderland Central) (Lab)
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Can I clarify what the hon. Member is proposing by introducing a separate test for people accessing assisted dying? Say an individual is on a respirator at the end of their life. Under what the hon. Member is proposing, if they said, “Please turn this respirator off; I want to die”, he thinks that it is appropriate for capacity to be assessed under the Mental Capacity Act 2005, but somehow he thinks that that person should have a different legal test if they said, “I want to take a drug to end my life,” knowing full well that they would have exactly the same result.

Danny Kruger Portrait Danny Kruger
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The simple answer is yes, I do. I think it is a causatively different decision. In fact, this whole Bill entails causative differences between those decisions. I will come to that point more in a moment.

Professor Owen made an important point to us regarding capacity. He said:

“You might be talking about a kind of cognitive impairment that has not reached the threshold for a diagnosis of dementia; you might be talking about a kind of mood problem or an anxiety problem that is sub-clinical; or you might be talking about a level of intelligence that is not clinically a learning disability.”

He talked about

“pressure within a family, let us say, which is often not malign in its intentions, but it exists.”

and about situations

“where there is an impairment and also an interpersonal pressure”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 234, Q297.]

Although we are not talking at this point explicitly about coercion and family pressure, the issues around capacity and coercion are nevertheless intertwined, and it is often very difficult for doctors to determine what is really going on. Again, the challenges around capacity are intense.

The point has been made by hon. Members that under clause 9(3)(b), if the second doctor in the process is in doubt about capacity, they “may” refer the person to a psychiatrist, but the clause in fact refers to “a registered medical practitioner” who “has experience of” the assessment of capacity—so not a psychiatrist, but just someone who has experience, whatever that means, of the assessment of capacity. It is not totally obvious what that means. Amendment 365 has been tabled overnight by the hon. Member for Bath (Wera Hobhouse) which would mean that both the first and second doctor, and indeed the court, if we are allowed to have a court process, “must”—not “may”— refer the person to a psychiatrist. That is not just if they are concerned about capacity, by the way. The court, or whoever it is, must conclude that there is no

“impairment of judgment arising from a mental disorder or other condition”.

I very much welcome that amendment and I hope that we will pass that in due course.

Danny Kruger Portrait Danny Kruger
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That is excellent news. For the first time so far in the course of this debate, we have a strengthening of the Bill from the hon. Member. That is great news—we can chalk that up as a victory, and as good sense breaking out. I am grateful for that. Let’s see what more we can achieve.

The point that I want to make is that we are in the foothills of understanding the effects of depression, cognitive impairment and social pressure on the decision to end life. That is a point made strongly by a series of witnesses to us in both oral and written evidence: we are still very much in the early stages of understanding how capacity interacts with mental illness, disability and coercion. Then, into the mists of vagueness, we are proposing to insert this single clunking, clumsy question: “Is there evidence of incapacity?” I strongly suggest that the abuse of the Mental Capacity Act that we are seeing here is not a way of simplifying the process of ensuring that there are a small number of strong safeguards; it is a great complication of the process and introduces more complexity, as we see from the many additional things that clinicians should consider. That is in direct contradiction to the principle of the Mental Capacity Act, which simply asks the question: “Is there capacity?”

The point has been made that there is more to the Mental Capacity Act than simply the question of capacity. There are concepts of best interests and supporting decision making. As the hon. Member for Penistone and Stocksbridge suggested, it is a cumulative process. The Mental Capacity Act entails not only the question of capacity but the consideration of best interests and whether we are supporting the decision making of an individual. I am not sure how those terms apply in a situation of assisted dying. It is not similar or comparable to the sorts of decisions that the MCA is intended to apply to.

Lewis Atkinson Portrait Lewis Atkinson
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This touches on some of the evidence given by Mr Ruck Keene, particularly around the best interests decision. From my reading of this legislation, it is very clear that there is no possibility for someone to make a decision on behalf of or in the best interests of anyone else. As the hon. Member for Solihull West and Shirley mentioned earlier, there are a number of exclusions in the Mental Capacity Act. For example, someone is not able to make a best interests decision on someone getting married or adopting. Does the hon. Member agree that in order to have a guarantee, without any doubt, on the best interests point, an amendment could be included to clarify that nothing in the MCA would allow a best interests decision under this legislation?

Danny Kruger Portrait Danny Kruger
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That is absolutely right. I do not think best interests can apply in this case. That is why the Mental Capacity Act is being abused. As the hon. Member for Penistone and Stocksbridge said, it is supposed to be cumulative. We are supposed to consider all aspects of the Mental Capacity Act, and best interests should be part of a consideration—but how on earth does one make a best interests decision about somebody deciding to commit suicide? The hon. Gentleman is right that best interests are excluded in the Bill, so the Mental Capacity Act is not being used, except for this most basic, low-level bar to cross, which is the capacity decision.

Terminally Ill Adults (End of Life) Bill (Tenth sitting) Debate

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Department: Ministry of Justice

Terminally Ill Adults (End of Life) Bill (Tenth sitting)

Lewis Atkinson Excerpts
Rebecca Paul Portrait Rebecca Paul
- Hansard - - - Excerpts

I thank the hon. Lady for that intervention. I know that she is wholeheartedly seeking to make sure that the safeguards in the Bill are as good as they can be, so I very much appreciate her recognising the positive intent behind my amendments.

It would be useful to understand whether those who are legally qualified believe that undue influence is already covered by “coercion”. I am not qualified to give a view on that, but if that were the case, that would provide some reassurance, and that could then maybe be included in guidance. However, I would want to see a legal opinion on that.

In the absence of such a legal opinion, putting that on the face of the Bill is the safest—and the right—thing to do at this point in time. I suspect that we will be voting on this shortly, before we can get a legal opinion, and given that we are talking about safety here, I would rather go for belt and braces and include “undue influence” on the face of the Bill.

Lewis Atkinson Portrait Lewis Atkinson (Sunderland Central) (Lab)
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Can I just clarify something? As my hon. Friend the Member for Penistone and Stocksbridge said, I understand that “undue influence” has an existing meaning, but only in equity law. The hon. Lady herself mentioned wills, for example, being challenged in probate. There, as I understand it, the burden of proof rests fully on the person challenging the will; there is not an active test that someone has not been unduly influenced. If the hon. Lady is to use undue influence as an existing legal concept, would she favour reversing the presumption on the burden of evidence? In addition, I think there is a distinction between actual undue influence and presumed undue influence in the case law. I wonder which of those she thinks we should be using when considering this amendment.

Rebecca Paul Portrait Rebecca Paul
- Hansard - - - Excerpts

I thank the hon. Member for that intervention. I think the point on probate is right; it is commonly used there, but it is not just used in that situation. My understanding is that, when it comes to decisions by clinicians with regard to withdrawing life-sustaining treatment, undue influence is one of the considerations.

Terminally Ill Adults (End of Life) Bill (Twelfth sitting) Debate

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Department: Ministry of Justice

Terminally Ill Adults (End of Life) Bill (Twelfth sitting)

Lewis Atkinson Excerpts
Danny Kruger Portrait Danny Kruger
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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.

Lewis Atkinson Portrait Lewis Atkinson (Sunderland Central) (Lab)
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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.

Danny Kruger Portrait Danny Kruger
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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”?

Terminally Ill Adults (End of Life) Bill (Thirteenth sitting) Debate

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Department: Department of Health and Social Care

Terminally Ill Adults (End of Life) Bill (Thirteenth sitting)

Lewis Atkinson Excerpts
Naz Shah Portrait Naz Shah (Bradford West) (Lab)
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Before we adjourned, I was talking about the two obvious problems with amendment 181. The first is that it would remove references to the Equality Act 2010 and the Mental Health Act 1983, which previously defined who did or did not have a disability or mental disorder. The amendment would remove those definitions, and the Bill would not define disability or mental disorder. What definition would medical practitioners, and indeed applicants, use to determine who does and does not have a disability or mental health disorder?

I appreciate that, as my hon. Friend the Member for Spen Valley explained, that was done on the basis of advice she took to remove the references to the Equality Act because people with cancer could also declare themselves to be disabled people. However, that leaves a real opening, which weakens the clause even further. I cannot understand why we would remove one clear definition but not provide a replacement. That is a serious concern.

However, there is a bigger problem with the clause as it would be changed by my hon. Friend’s amendment. In referring to someone who could not be disqualified from assisted dying, the clause would still use the word “only”—again, I emphasise the word “only”. That leaves the door open for individuals with mental health disorders or disabled people to qualify for an assisted death based on the physical consequences of their condition. If the goal is to prevent people with mental illness or disabled people from qualifying, this amendment fails to do that. It weakens, rather than strengthens, the Bill’s safeguards.

As we heard in oral evidence, there are now 60 documented cases of individuals with eating disorders who have died by assisted death internationally.

Lewis Atkinson Portrait Lewis Atkinson (Sunderland Central) (Lab)
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Does my hon. Friend accept that nearly all those cases were in jurisdictions whose schemes bear no resemblance to the one proposed in the Bill?

Naz Shah Portrait Naz Shah
- Hansard - - - Excerpts

I accept that the majority of those 60 cases are in such jurisdictions, but to me it does not matter whether it is the majority or one—one death is too many, as I am sure my hon. Friend will agree. In Oregon, the evidence was that it was two, but it is also important to reflect on the fact that Oregon does not record these things. There is no record of the people who had anorexia—by and large, it is women—and who felt that they fit the criteria for assisted death, or that they were on a trajectory to fit it, because they had decided not to eat. So we cannot exactly rely on the two cases that have been found—and those were found only because of the research that was carried out. That does not quite satisfy the question.

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Daniel Francis Portrait Daniel Francis
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I hear that point but, looking at my postbag, the people who berate me for not supporting the Bill often talk about their loved ones with motor neurone disease or Parkinson’s, which I understand from oral evidence will be exempt. We need to make it clear which disabilities and conditions will be eligible, and I am not sure that the amendments before the Committee nail it down. I am concerned that the wording would lead to potential loopholes and legal challenges.

We should still be concerned about legal review of the Bill, based on indirect disability discrimination. The Equality Act says that indirect discrimination happens when a rule, a policy or even a practice that applies to everyone disadvantages people with a particular disability, compared with people who do not have that disability, where that cannot be shown to be justified as being intended to meet a legitimate objective in a fair, balanced and reasonable way.

If we accepted this amendment to allow the inclusion of cancer and some other disabilities set out in the Equality Act, I believe it would be argued in due course that other disabilities meet the criteria for assisted dying and, despite the promises made to this Committee and to the House in good faith, the loopholes would allow the criteria to be widened.

Other amendments in this group retain the reference to the Equality Act 2010, which could equally result in legal challenges down the line, for the reasons my hon. Friend the Member for Spen Valley outlined this morning. I am not deliberately being difficult, but I am not sure that any of the amendments would completely achieve what they seek to achieve.

I await the Minister’s view on the matter but, as things stand, I am concerned that we will take the clause back to the House without completely satisfying Members’ aims. By allowing those with cancer to seek assisted dying, there could be a loosening of the rules for other disabilities. I fear there could be manuscript amendments on this matter, but I await the Government’s view on the robustness of these amendments if they were to be accepted.

Lewis Atkinson Portrait Lewis Atkinson
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I want to come back to the Bill as drafted. The key factor in clause 2, for me, is the focus on terminality. That is what determines eligibility: that death is reasonably expected within six months. The clauses that we are discussing, subject to amendment, merely clarify—rightly, because this is important, and I too will wait to hear the Government’s guidance—that solely having a disability or a mental disorder does not in itself provoke eligibility. I fear that we are overcomplicating matters; the focus on terminality is in the name of the Bill. It is the Terminally Ill Adults (End of Life) Bill, and that is what we are focusing on today. I urge Members to think about that point when they consider the amendments, including amendment 181 from my hon. Friend the Member for Spen Valley.

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Rebecca Paul Portrait Rebecca Paul
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I thank my hon. Friend—another doctor. I would suggest that diabetes cannot be reversed, but can be managed with treatment. All I am trying to do is make sure that that piece is picked up. I think we all agree that we would not expect diabetes to fall within the terminal illness diagnosis.

No fewer than 15 clinicians and medical researchers mentioned diabetes in written evidence. Other conditions are mentioned too. Two consultant physicians—Rosemarie Anthony-Pillai and DP Whitehouse—say that those on medication for heart failure could qualify if they stopped taking their medication. Dr David Randall, a consultant nephrologist at the Royal London Hospital, sets out in written evidence the example of a young man who has benefited from a kidney transplant but stopped his immunosuppression medication. That would lead to transplant rejection and, likely, death within a few months. Would he qualify as terminally ill if we were not to agree to these amendments?

Lewis Atkinson Portrait Lewis Atkinson
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The examples that the hon. Lady gives of the refusal of life-preserving treatment—for example, stopping insulin—would inevitably lead to death, so why does she believe that anyone in such a situation would need to seek voluntary assisted dying?

Rebecca Paul Portrait Rebecca Paul
- Hansard - - - Excerpts

I am sharing the content of written evidence. People working in this arena—medical professionals and clinicians—have taken the time to submit written evidence, which suggests that they see a risk, so this is something that we need to think about. The hon. Gentleman could be right when he asks why someone would seek assisted death in that situation, but it is more about if someone technically qualifies. Obviously, we are still yet to get through the Bill, and there is lots for us to debate, but we want to ensure that people are not put on that pathway if they are not actually terminally ill and their condition can be managed. People could be in a low place, and we need to provide support. This comes back to my point about the balance of best interests. It is really difficult to set the right level, but we need to think about best interests and protect people at their lowest point.

In Oregon, conditions such as anorexia, diabetes, arthritis and hernias have qualified for assisted death, not because they are inherently fatal but because treatment was refused or was unaffordable. We also need to think about situations such as supply chain issues with certain treatments. Situations that we do not want to happen could arise, and we need to think about what that means for this Bill.

Some lawyers and doctors in the US have advised patients on how to bypass the terminal illness criteria by refusing food and water until they become terminal—we have talked about that quite a lot today. There is some evidence of that happening. Cody Sontag, an Oregon woman with early-stage dementia, had few symptoms and was not eligible for assisted death, but after she refused food and water for a few days, her doctor ruled that she met the six-month prognosis requirement.

It is important that we carefully consider young women suffering with eating disorders, but I appreciate we have spoken about that group a lot today, so I will be brief. In Chelsea Roff’s evidence, she set out that at least 60 people around the world have been euthanised or assisted in suicide where anorexia nervosa has been listed by name as a terminal condition. In 100% of the cases, the people were women, a third were between the ages of 18 and 30, and two thirds were under the age of 40. Roff said,

“I have to emphasise that these were young women who did not have failing organs and did not have comorbid terminal conditions…they had decades of life ahead of them.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 139, Q175.]

UK courts have already ruled that treatment can be withdrawn from young women with anorexia, acknowledging that the likely result will be their death, after doctors framed their condition as terminal or untreatable. These examples powerfully demonstrate why it is vital these amendments are accepted, so that these conditions do not lead to a person qualifying for assisted death, if they can be managed sufficiently with treatment. In oral evidence, Dr Miro Griffiths asked us,

“What constitutes six months left to live, particularly if you are engaging with technological devices, medical assistance and so on? For example, I have a progressive condition that continuously makes me weaker and has respiratory complications and so on. If I remove the ventilator that I use at night, if I remove my other medical devices and if I stop my engagement with therapeutic services, does that constitute me having a terminal illness, because my rapid acceleration towards death becomes more evident?”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 142-143, Q179.]

In written evidence, Pathfinders Neuromuscular Alliance warned that for those with conditions like muscular dystrophy, access to treatment is essential. It said,

“It would not be unreasonable therefore to suggest an individual with neuromuscular respiratory failure could die within six months—and yet they might also live 20 to 30 additional years in this state.”

In written evidence, a group of leading physicians and researchers, including experts from John Hopkins University and the Royal College of Psychiatrists said,

“The Bill’s definition of terminal may not adequately distinguish between a condition that is inevitably fatal and one that only becomes terminal without adequate care.”

They added,

“Under this Bill, patients with incurable but treatable conditions could become terminal if they are unable to access timely treatment or choose to forego life-sustaining care.”

It is therefore vital that the definition of terminal illness is tightened to avoid unintended consequences. These amendments would ensure that the Bill applies only to those who are generally at the end of life, without prospect of recovery. I urge the Committee to give consideration to accepting them.

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Danny Kruger Portrait Danny Kruger
- Hansard - - - Excerpts

I think so. The hon. Lady is absolutely right that there is this difficult loophole that somebody may have capacity and be refusing food and drink and would therefore potentially be eligible. In the Bill as it stands, we have an expedited process for people whose prognosis is only a month. There, the 14-day waiting period could be reduced to just 48 hours. If a person stopped eating and drinking, their death would almost certainly happen within a month. In other words, a person who is not terminally ill could make themselves eligible for an assisted death within 48 hours simply by refusing sustenance. It is very important that we recognise that and explicitly exclude it.

I will refer quickly to other jurisdictions where this specific situation occurs and the voluntary stopping of eating and drinking is used to qualify for legal drugs. A peer-reviewed article in the Journal of the American Geriatrics Society discusses this case—it may be the one referred to earlier. The authors noted that if anyone can access VSED—voluntary stopping of eating and drinking—then anyone can qualify for medical assistance in dying. In Colorado, 12 people qualified for assisted suicide based on a diagnosis of severe malnutrition.

The American Clinicians Academy on Medical Aid in Dying, an organisation of doctors who provide assisted suicide, acknowledges this loophole. Its guidance states that

“there is nothing in the letter of the law”

to prevent voluntary stopping of eating and drinking from being used in this way. It adds that that would

“essentially eliminate the criteria of terminal illness,”

because a person could always qualify as having terminal illness if they stopped eating and drinking. That is obviously not what the Bill’s sponsor and drafters wish. I hope they will consider accepting the amendment to close that loophole.

I will not repeat points made very eloquently by my hon. Friend the Member for Reigate, but I echo the need to ensure that the Bill is not for conditions that, although they cannot be reversed by treatment, can nevertheless be controlled or substantially slowed. I will therefore support the amendments in the name of my hon. Friend the Member for South Northamptonshire.

I pay tribute to the hon. Member for Harrogate and Knaresborough and to the people he speaks for in tabling amendment 234. I recognise absolutely that the MND Association has pointed out that the six-month rule would not work for all MND sufferers. It successfully persuaded the last Government to change the rules on benefits in recognition of that point, and its evidence to us, it has requested a clear and workable definition for assisted suicide. It was not very clear on what that would be, and there are practical problems with extending to 12 months, specifically the one we have with six months—the difficulty of prognosis, which would be twice as bad. I also refer to the evidence from Professor Sleeman, who made the point that a non-neurologist would find it particularly difficult to make an accurate 12-month prognosis for MND.

The main reason to object to the principle of the amendment—I appreciate that the hon. Gentleman is not moving it, but it is an important principle to discuss—is that it makes no sense at all to have two different prognosis periods. Of course, we can see where it will go. The fact that the amendment has been tabled and selected, that it is in scope, and that people will support it in this Committee or beyond, or outside Parliament, is evidence of where things go. We saw it very clearly in the evidence we heard from witnesses from Australia, who pointed out that there is no logical reason to have two prognoses—one for cancer and one for neuro-degenerative disorders. Their response was, “Well, let’s make it 12 months for everyone,” and of course that is the way things would go.

I finish with a tribute to the great quixotic effort of my hon. Friend the Member for Runnymede and Weybridge, who is not on the Committee. Runnymede is the home of Magna Carta; the spirit of liberalism lives on in my hon. Friend, a genuine liberal who wants to scrap the period of prognosis altogether, because he genuinely believes in absolute autonomy. I have been trying to make the Bill live up to its claim to be a Bill for safeguarding; he wants it to live up to its claim to be a Bill for autonomy. In principle—in logic—he is absolutely right. If we think that some people should have access to suicide assisted by the state, then why should person A get it and not person B? Needless to say, I disagree with him.

Lewis Atkinson Portrait Lewis Atkinson
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I rise to speak in favour of the current, tightly drawn eligibility criterion of a six-month terminal diagnosis. I agree with my hon. Friend the Member for Bradford West that that was a central plank of the Bill as introduced and as debated across the House on Second Reading. I therefore rise to speak against all the amendments tabled to the clause.

Dying people want to put their affairs in order. That includes thinking about the death that they want and how they want to spend their time with their family. Dying people do not want to die, but they do not have an option to live. I feel that the way we talk about death perhaps has not been fully reflected in the debate we have had on the amendments.

In my mind, the evidence from elsewhere is very clear that those who seek assisted dying seek approval for it, going through the safeguards—significant safeguards, as set out in the Bill—so that they can spend the remaining time with their family, with enhanced feelings of control and autonomy, removing some of the fear that causes them to ask, “What if I will have no way out of inevitable pain?” That does not mean, of course, that people wish to die more quickly. The fact that the Bill sets out a six-month eligibility criterion does not mean that people will rush to end their own lives as soon as it is possible to do so. It means that six months is the threshold at which they can start potentially exploring the options and getting through the onerous—rightly onerous—process of eight different stages of capacity checks, three different stages of approval, multiple doctors and so on, so that they have the option. Indeed, as my hon. Friend the Member for Spen Valley set out earlier, a significant proportion of people who have been approved for assisted dying elsewhere do not take up that option, because their end of life is not painful—and that is fantastic—or can be managed through palliative care. That is something that we would all want. However, knowing that they have the option significantly increases their quality of life, their ability to relax with their families and their ability to spend time with their loved ones.

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Naz Shah Portrait Naz Shah
- Hansard - - - Excerpts

My hon. Friend is making a powerful speech, and I agree with what he says about autonomy. As I said earlier, autonomy does not necessarily have to lead to pain, and it could be that I do not want to get to that stage. People will never know whether they could have lived longer. Does he not agree?

Lewis Atkinson Portrait Lewis Atkinson
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Sensible amendments have been tabled elsewhere in the Bill—not to the clause that we are debating—that would strengthen the initial conversations and ensure that people make informed decisions and have access to, and conversations about, all the forms of support, psychological or otherwise. I think that those will address my hon. Friend’s point.

In terms of the eligibility criteria, Chris Whitty was clear that there is diagnostic uncertainty in both directions. He said that

“a significant minority of people die before they actually get to the point”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 37, Q15.]

of the six-month prognosis. Because of that uncertainty, if we attempted to make the criterion much less than six months, we would end up excluding people. From all the conversations I have had, it is clear that once people have a terminal diagnosis, they want to put their affairs in order; doing so means that they can enjoy their final months with their families. We must not reduce eligibility and limit access to those whose disease unfortunately progresses more quickly than they would like and the prognosis suggests. I therefore oppose amendment 48, in the name of my hon. Friend the Member for Bradford West.

The amendment talks about “recommended treatment”. In all my years in the NHS, shared decision making has been a key principle. No one other than the person in question can make the decision about what trade-off they are willing to accept. Invasive chemotherapy may have a 20% chance of elongating my life. Am I willing to accept a 20% chance? Am I willing to accept a 30% chance? What I decide is right for me may be different from what other individuals decide, so a doctor is not in a position to say, “You should accept this because it will give you a 10% chance,” or, “It will give you a certain level of pain that I’m willing to accept.” We each have to make those decisions ourselves.

Naz Shah Portrait Naz Shah
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Will my hon. Friend give way?

Lewis Atkinson Portrait Lewis Atkinson
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No, I will make some progress.

I feel that the amendment risks pressuring people to accept courses of intervention against their will, and I do not think it is consistent with the important principles of autonomy and consent. Because of the safeguards, approvals and reflection periods built into the Bill, going through the process of approval will clearly take in excess of a month. That is why amendment 282, in the name of my hon. Friend the Member for York Central, which would limit the eligibility to one month, is fundamentally not compatible with the safeguards in the Bill, as my hon. Friend the Member for Spen Valley made clear. To me, six months is absolutely the right balance. It reflects people’s wish to put their affairs in order and allows for prognostic uncertainty on the downside—someone given six months may actually only have two or three months to live—but it still allows the operation of robust safeguards and reflection periods.

I turn briefly to the other amendments. I commend my hon. Friend the Member for Broxtowe for the points she made. I share the concern that replacing “inevitably” with “typically” would risk weakening the definition of “terminal illness” and expanding access to other conditions. I fear that “typically progressive” is a weaker interpretation, so I cannot support the change, because I support a tightly drawn Bill with tightly drawn eligibility criteria. For the same reason, although I have sympathy for the amendment tabled by the hon. Member for Harrogate and Knaresborough, I think it goes beyond the scope of what the House discussed in November and the contours of the current debate.

Amendments 9 and 10 refer to disease being controlled or substantially slowed. Those are not recognised medico-legal terms. What is the definition of “substantially slowed”? Who would define it? Is it something that takes 20%, 50% or 100% longer? We talk about the risk of inserting undefined terms and of court interpretation, and I fear that introducing such an amendment would give rise to that.

The people best placed to make decisions about whether the treatment will suitably slow the progression of the disease are the dying people themselves. They are the only people who should do that—fully informed, of course, by their medical and clinical teams. Each of us, when the end is nigh—it will come to me, as it will to us all—has to make that decision ourselves, not on the basis of a recommendation mandated in law or some definition of “controlled” or “substantially slowed”. It feels that the legislature would be putting in primary legislation decisions that I should make about the treatment that I should accept, so I am not in favour of those amendments.

I finish with reference to amendment 402. Although earlier I wanted to make progress, I do not want to rule out any further interventions, if my hon. Friend the Member for Bradford West or others would like to come in. I recognise the concern, and we need to talk about people with anorexia with the respect, dignity and seriousness they deserve. I have heard it said—I think my hon. Friend said it—that there is nothing in the Bill to stop that being the case, and I fundamentally disagree for many reasons. First, as the Bill sets out, capacity is checked eight times. The Court of Protection has repeatedly found that people with anorexia do not have the capacity to make decisions about stopping eating. Although a best interest test may have been made, that is not relevant, as set out in the Bill. People have to have the capacity to request an assisted death, checked eight times. My hon. Friend the Member for Spen Valley has already set out that she is minded to accept—or will accept—amendment 6 to clause 9(3)(b), so that, if there is any doubt about capacity, a psychiatric opinion “must” be sought.

Like my hon. Friend the Member for Bradford West, I considered the written evidence saying that, in instances of a patient with anorexia, psychiatric input is absolutely necessary. Absolutely—in every case where someone has anorexia, under an amended clause 9, psychiatric opinion must be sought as to capacity. That is before we get to the further set of amendments to clause 12.

Naz Shah Portrait Naz Shah
- Hansard - - - Excerpts

In the cases that went before the court, the judges, in nine out of 10 cases, found that all those young ladies did indeed have capacity to refuse their food, and it was as a result of that that their deaths became inevitable. Will my hon. Friend comment on that?

Lewis Atkinson Portrait Lewis Atkinson
- Hansard - -

That is not my understanding, and I have sought some clarification, including from Professor Hoyano, who provided oral evidence to us, and I believe that that was not her understanding either.

Given the “must” in clause 9 regarding psychiatric referral to a third tier panel—which, let us remind ourselves, is not in place in any of these jurisdictions from which figures are cited around potential deaths of people with anorexia—I feel there are significant safeguards. Furthermore, we have just agreed to amendment 399 tabled by the hon. Member for East Wiltshire, clarifying the “medical condition” piece, which provides a further safeguard.

I respect the need for us to consider these matters carefully, but I urge a degree of holistic thinking when we talk about individual clauses. Some of the statements being made—that there are no protections in place—just do not fly, to me, given the Bill as a whole.

Marie Tidball Portrait Dr Tidball
- Hansard - - - Excerpts

My hon. Friend is correct in his interpretation of the judgments in those cases, but does he agree that the evidence given by Chris Whitty to clarify his statement was helpful in clarifying that the application of the test for capacity is heavily orientated towards the gravity and complexity of the decisions to be made? That is also underpinned, as my hon. Friend underlined, by the amendment tabled by my hon. Friend the Member for Spen Valley.

Lewis Atkinson Portrait Lewis Atkinson
- Hansard - -

I do, and I thank my hon. Friend for bringing my attention to that; I was struggling to put my hands on it.

In my view, clause 2 does a difficult job very well in tightly drawing eligibility criteria so that the Bill does what it says on the face of it—that it allows access for terminally ill adults, at the end of their life. By having a six-month prognosis, rather than anything else, it allows individuals to put their lives in order and have the best last months of their lives possible. I therefore speak against the amendments and in favour of the clause as drafted.

Stephen Kinnock Portrait Stephen Kinnock
- Hansard - - - Excerpts

As usual, I will make brief remarks on the legal and practical impact of amendments, while emphasising that the Government continue to remain neutral on the Bill and on assisted dying more broadly. This series of amendments, which I will take in turn, seeks to change the definition of “terminally ill”, either widening or narrowing the cohort of people able to access assisted dying services.

Amendment 123 would change what it is to be “terminally ill” for the purposes of the Bill from having an “inevitably” to a “typically” progressive illness, disease or medical condition that cannot be reversed by treatment. That would widen the pool of those able to access assisted dying services by reducing the level of certainty that a doctor must have that the illness, disease or medical condition in question is progressive—from one that is “inevitably” progressive to one that is “typically” progressive.

Amendment 9 seeks to amend the definition of “terminally ill” such that it would not include a person who has an inevitably progressive illness, disease or medical condition that can be reversed, controlled or substantially slowed by treatment. The effect of the amendment is that such a person would not be eligible for lawful assistance to voluntarily end their own life. Should the amendment be accepted, the effect would be to restrict the eligibility for assisted dying services to a narrower category of patients than is currently set out in the Bill. The amendment may make assessment of a person’s prognosis and eligibility under the Bill more extensive, as it would be likely to require an assessment of a broader range of treatment options.

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My concern throughout this debate has been that we are at risk of passing a skeleton Bill. It is a long Bill, because it is complicated, but actually the key questions about how it will operate in practice—what conditions would be eligible, what drugs would be used—will often be determined not by Parliament, but either by Ministers using the negative procedure or, as in this case, simply by the panel and by doctors. If we are serious about safeguards and about preventing the slippery slope, let us insist that the Bill specifies that any further expansion or evolution is determined not out there, but in here. Let Parliament be the sovereign power that determines what is eligible and what is not.
Lewis Atkinson Portrait Lewis Atkinson
- Hansard - -

I rise to speak briefly in opposition to the amendments. When the chief medical officer gave oral evidence to the Committee, the hon. Member for Richmond Park asked him:

“Is it possible to come up with a list of illnesses that are terminal that would qualify under the legislation?”

The response was very clear:

“If I am honest, I think it would be extremely difficult.”

It is difficult in both directions, because some illnesses or diseases can be terminal, but are not necessarily terminal. People can live with prostate cancer for many years. Setting out in the Bill a list of specific diseases or illnesses that would be eligible risks achieving exactly the opposite of the amendment’s intention. To quote Professor Whitty again:

“Equally, there are people who may not have a single disease that is going to lead to the path to death, but they have multiple diseases interacting…I therefore think it is quite difficult to specify that certain diseases are going to cause death and others are not, because in both directions that could be misleading.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 32, Q5.]

Further to the point that the hon. Member for East Wiltshire made about on judicial oversight, my understanding is that giving power to the Secretary of State to make a list that includes only some diseases is absolutely inviting action through the courts on the reasonableness of why one disease is on the list while others are not. We would end up in much more of a legal quagmire than we otherwise would. The safeguards that we have talked about, as to eligibility criteria, terminality and capacity, are in the Bill as drafted. Those are the safeguards that we need. A list would further muddy the water and would create confusion.

Stephen Kinnock Portrait Stephen Kinnock
- Hansard - - - Excerpts

I have some brief comments to make. Amendments 12 and 13 seek to further define a terminal illness for the purpose of the Bill; I will set out some details about their effect. The amendments would add a requirement that a list of a terminal illnesses for which people are eligible to seek assistance under the Bill be specified in regulations made by the Secretary of State. The effect would be that only a person who has an illness, disease or medical condition listed in regulations, and who meets the other eligibility criteria, would be eligible to be provided with lawful assistance to voluntarily end their own life.

I draw the Committee’s attention to the chief medical officer’s oral evidence given on 28 January, which was well articulated by my hon. Friend the Member for Sunderland Central. The CMO said that multiple diseases may interact, making it

“quite difficult to specify that certain diseases are going to cause death and others are not”.––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 32, Q5.]

It is also the case that many illnesses, diseases or conditions that may be terminal in one case may not be so in another. Committee members may therefore wish to consider where a focus on specific illnesses or diseases, rather than on the facts of an individual case, could aid clinicians in their decision making.

The amendments also include a discretionary power for the Secretary of State to make regulations that expire after 12 months in order to make temporary additions to the list of illnesses that meet the definition of terminal. It is not clear what types of illnesses, diseases or medical conditions are intended to be captured in such regulations. I hope that those observations on the purpose and effect of amendments 12 and 13 are helpful to the Committee in its considerations.

Terminally Ill Adults (End of Life) Bill (Fourteenth sitting) Debate

Full Debate: Read Full Debate
Department: Ministry of Justice

Terminally Ill Adults (End of Life) Bill (Fourteenth sitting)

Lewis Atkinson Excerpts
Naz Shah Portrait Naz Shah
- Hansard - - - Excerpts

My hon. Friend makes a very valid point. Another issue that we have not got to yet, but that we will be looking at, is the doctors who do not want to take part in this process. We must consider whether there will be a bias; he is right to point that out. Will there be a subconscious bias towards helping people? My hon. Friend the Member for Stroud suggested earlier that doctors assist a person to reach a decision, according to the Mental Capacity Act. This is the crux of it for me: when a doctor is assisting a person in their best interests to come to a decision about treatment, for example, that is a different test from what we are testing here.

Lewis Atkinson Portrait Lewis Atkinson (Sunderland Central) (Lab)
- Hansard - -

I share the concerns of my hon. Friend the Member for Bexleyheath and Crayford about the use of DNRs—what happened during covid to people, particularly those with disabilities, was a disgrace. Does my hon. Friend the Member for Bradford West accept that this is an entirely different situation, however, in that people must actively seek it, be tested multiple times, and express a wish for it? The situation with DNRs involved medical professionals making decisions on behalf of a patient without their input.

Naz Shah Portrait Naz Shah
- Hansard - - - Excerpts

I thank my hon. Friend for his intervention. I will be speaking to that in the next group of amendments, so I do not want to go through it in detail now, but I absolutely accept that that was a disgraceful situation—

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Danny Kruger Portrait Danny Kruger
- Hansard - - - Excerpts

It pleases me but it does not satisfy me. I am encouraged by it, but I am not fully satisfied. Obviously, it is insufficient. The hon. Gentleman and the hon. Member for Spen Valley put great faith in the training that we are going to introduce. Well, I hope they are right. Let us certainly do as much training as we can— likewise, let us get as much data as we can—but the provision set out is not sufficient, not least because the training will be in the application of the Mental Capacity Act, which we are saying, even if properly applied, has all sorts of problems with it, as my hon. Friend the Member for Reigate explained.

Yes to training and yes to the option of the referral—that should be mandatory, and I think there is a proposal to effect that. Every additional safeguard is welcome. It goes back to my point about whether we are being thorough or simplistic. I am not sure. If I think there are four assessments, but the hon. Member for Stroud thinks there are eight, does that not fail Chris Whitty’s test of being simple? If eight is in fact thorough, would nine not be even more thorough? The suggestion that we have hit it at the perfect sweet spot and that to veer one side is to introduce all sorts of bureaucratic hurdles seems unrealistic. Surely we can apply a little more rigour to this exercise.

Lewis Atkinson Portrait Lewis Atkinson
- Hansard - -

I know that we have interacted before about our fundamental difference on the ventilator test: someone saying, “I want to die, please turn off my ventilator” as opposed to, “I want to die, please let me take this substance.” Although we may have a fundamental disagreement on whether those things are the same or different, if he still thinks it is appropriate for the Mental Capacity Act to be used as a one-off test, with no other safeguards, for turning off a ventilator, then why is it appropriate in that situation but not when tested multiple times in this instance?

Danny Kruger Portrait Danny Kruger
- Hansard - - - Excerpts

I recognise that this is a vital point; I am not surprised that we keep returning to this important distinction. I do think that there is a vital distinction between accepting treatment and declining a treatment. In fact, the treatment proposed here is not a treatment at all—the British Medical Association specifies that it is not a medical treatment. The termination of life deliberately does not apply to a particular condition, whereas a ventilator, or any treatment that one might decline or withdraw, is specific to a particular condition or illness. There is a difference in purpose, even if the effect—which is death—is the same.

To the hon. Member’s point on whether the MCA is appropriate in cases of withdrawal of treatment; well, there we do seem to have a substantial body of clinical practice over many years, to which I am not aware of many objections. My non-expert view is that it is probably appropriate to continue with the MCA in those cases. I do not have an objection there and I am certainly not making that argument. It may well be that it is appropriate, and I am sure we will constantly review the applicability of that particular test in those circumstances. It might well be that some of the problems that I am identifying with the proposed law may also apply in cases of withdrawal of treatment—but I am not aware of that, because I do think they are substantially different. Even if it were perfectly acceptable to apply the MCA in cases of withdrawal of treatment, that does not mean it is appropriate in this case, because they are fundamentally different scenarios. I do not detect that I have satisfied the hon. Member, but it is always good to have the exchange.

I will conclude my challenge to the suggestion that the MCA is universally understood and properly applied. The Court of Protection case of Patricia, a patient with anorexia nervosa, has been referred to a number of times in the course of our debate. We heard evidence from a group of anorexia sufferers who wrote to the Committee to say:

“The judge in the Court of Protection case of Patricia…stated that he had changed his mind several times while considering the evidence. He then came to a different view on capacity from the treatment team. This single case exemplifies how complex the processes described under Clauses 7, 8 and 12 of the Bill in relation to assessment of capacity are likely to be”.

We are not talking about a straightforward process. It is clear from all the evidence we have had that there is a real problem with the way that the MCA would apply.

I want to make a rather obvious point, which is that when the MCA was debated and passed 20 years ago, assisted dying, or assisted suicide, was not on the table; it was not part of those considerations, as far as I am aware. It turns out that Dignity in Dying was on the case back in those days, although I think it was still called the Voluntary Euthanasia Society then. That group was conscious of what would come—I do not think that others were—and I detect that it is quite pleased now with the influence applied then to ensure that the presumption of capacity would be very useful one day when it came to passing an assisted dying law. It was not the intention of the House of Commons or of the Committee that considered that Bill that in fact they were establishing a test that would be applied in the case of assisting suicide and changing the terms of the Suicide Act. I am sure that if that had been the case, it would have been commented on, and I daresay the Mental Capacity Act would not be in its current form, or there would have been some addendum to that effect.

My hon. Friend the Member for Reigate referred to the very powerful evidence from lawyers, Baroness Hale and the Royal College of Psychiatrists about the challenge here. I want to quickly say, in support of amendment 322 in the name of the hon. Member for Bexleyheath and Crayford, that my hon. Friend the Member for Reigate made a powerful argument about impairment; it is striking that the MCA only applies when there are cases of impairment of, or disturbance in, the functioning of the mind or brain—I will not repeat the point she made, but I urge Members to reflect on it.

I will quote Ruth Hughes, a barrister specialising in mental capacity law and inheritance. This refers back to the point that my hon. Friend the Member for Reigate and I discussed in an earlier sitting about the clear opportunity that the Bill affords people to seek an assisted death for the sole purpose of saving their family money. Ruth Hughes says:

“If the…Bill is passed, then this will lead to some of the most vulnerable people dying for others’ financial gain. That is certain…Although in general I would, of course, accept the importance of the presumption of capacity, in relation to assisted dying, I consider that, the burden of proof for capacity should be reversed so that it is necessary to establish capacity to decide to die positively.”

Amendment 322 is tabled for that very obvious reason: there is a clear financial advantage for family members, and, I am afraid to say, there are many other distressing motivations that people might have that are not intended by the Bill’s promoter, the hon. Member for Spen Valley. It feels absolutely appropriate that we reverse the burden and have a much higher test of eligibility than that afforded by the Mental Capacity Act.

I want to make another point, although I do not know how hon. Members will feel about it because a lot of people do not accept that we are talking about suicide, even though it is in the terms in the Bill that we are amending the Suicide Act. The assumption of capacity in somebody taking their own life is what is proposed if we adopt clause 3: we are proposing that somebody has capacity if they end their own life. That implies directly that somebody who is standing on a window ledge or a bridge, about to commit suicide, is assumed to have capacity and to be making a rational decision, which other people should support. I say that directly, because there is a direct read-across with the whole topic of suicide prevention, which obviously we all strongly believe in. How can we say that somebody who is about to take their own life, unassisted, does not have capacity and is not making a settled and informed wish? In which case, why should we stop them or try to wrestle them back from the edge?

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Lewis Atkinson Portrait Lewis Atkinson
- Hansard - -

Does my hon. Friend agree that clause 8(6), which requires the second doctor to be independent of the first—they must not be

“a partner or colleague in the same practice or clinical team”—

would protect against the situation on which the hon. Member for East Wiltshire speculates?

Jake Richards Portrait Jake Richards
- Hansard - - - Excerpts

Yes, there are safeguards and mechanisms in the Bill to ensure that and to protect from a culture that would incentivise this practice.

Terminally Ill Adults (End of Life) Bill (Sixteenth sitting) Debate

Full Debate: Read Full Debate
Department: Department of Health and Social Care

Terminally Ill Adults (End of Life) Bill (Sixteenth sitting)

Lewis Atkinson Excerpts
Kim Leadbeater Portrait Kim Leadbeater
- Hansard - - - Excerpts

Well, that is the purpose of clause 4: the doctor has to lay out the options available to the patient as long as all the criteria are met.

We can see from the guidance that currently exists that doctors take a very sensitive and patient-centred approach to end-of-life conversations. If the law were to change, that approach would continue with additional training specifically related to assisted dying, as has been discussed. It would also mean that the issues that doctors currently face around discussing assisted dying would be addressed.

As the BMA says, at the moment

“The law does not provide a clear definition of which actions might constitute assisting or encouraging suicide…What if a patient wishes to travel abroad for assisted dying? While the act of travelling abroad for assisted dying is not illegal, assisting, facilitating, or encouraging someone to do so is a criminal offence…doctors need to be aware of the possibility of legal and professional sanctions if they were to do so.”

I imagine that that must create a real sense of jeopardy for doctors. Similarly, the GMC recognises that doctors will face challenges in

“ensuring that patients do not feel abandoned”,

while ensuring that the advice or information that they provide does not encourage or assist a person to end their own life.

These are very difficult conversations for patients and doctors, but by legalising assisted dying in this country we can give clear guidance through a robust legal framework, and create the thorough, transparent process that is currently lacking. These conversations provide a safeguard while the person is still alive. As the former director of public prosecutions, Sir Max Hill, told the Committee,

“In each of the 27 cases I considered, the deceased individual was already dead, and that is when the scrutiny started. The major advantage of the Bill, if I can put it that way, is that that will be reversed, and scrutiny will be before death.” ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 86, Q111.]

Mark Swindells from the General Medical Council told us:

“We do get inquiries from doctors who are concerned that they are doing the right thing when it might become apparent to them that a patient wants to travel overseas to access assisted dying.” ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 46, Q36.]

Bringing those conversations out into the open has to be better for the patient and the practitioner.

Lewis Atkinson Portrait Lewis Atkinson (Sunderland Central) (Lab)
- Hansard - -

With reference to amendment 8, and further to the intervention from the hon. Member for East Wiltshire, can my hon. Friend reflect on the provisions as set out in clause 4(1) and (2), which say that the issue relates to doctors’ professional judgment and that doctors are under no obligation to raise those issues in any situation?

Kim Leadbeater Portrait Kim Leadbeater
- Hansard - - - Excerpts

Absolutely. This is about professional judgment, which is what the BMA is really clear about. Doctors have to be able to use their professional judgment. They are not under any obligation to raise the issue, but they are not under any obligation not to raise it. The BMA is really clear about that. I thank my hon. Friend for his intervention.

I welcome amendments 319 and 320 from my hon. Friend the Member for Bexleyheath and Crayford and I thank him once again for his positive engagement with the Bill. He raises a very valid point about the initial discussion. While the Bill is very clear that it applies only to terminally ill adults over the age of 18, in that someone would have to be over 18 to make the first declaration, it is not clear that the initial discussion could also not happen with someone under the age of 18.

We should not prohibit open conversations with terminally ill young people and their families, as they create openness, transparency and safeguards and provide much-needed support at what most of us can only imagine must be the most difficult time of anyone’s life. However, I think it should be made clear that the actual assisted dying process cannot be embarked upon unless someone is over the age of 18. I have taken advice about how best to incorporate that into the Bill from a drafting perspective. As a result, I have tabled amendment 418, which applies to clause 5, and states that regulations must provide that the first declaration contain, among other things,

“a declaration that they have had a preliminary discussion with a registered medical practitioner, that they were aged 18 or over when they had that discussion, and that they understand the information referred to in section 4(4)(a) to (c) that was provided during that discussion”.

As such, the aim of amendments 319 and 320 is achieved. I hope that that is to the satisfaction of my hon. Friend the Member for Bexleyheath and Crayford.

With regard to amendment 339, I have listened very carefully to the concerns of my hon. Friend the Member for Bexleyheath and Crayford, who tabled it, and the evidence from Mencap chief executive Dan Scorer, who suggested that for terminally ill people with learning disabilities

“that initial conversation has to be incredibly well supported and structured…the person should have accessible information in advance of that discussion so that they are fully informed about all their rights in terms of treatment options at end of life”. ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 280.]

I absolutely agree with the intention of the amendment. I am seeking advice on the legal and technical implications, as I believe there is some tightening up that would need to be done around some of the phrasing, such as the concept of “sufficient time” or what would constitute a “supporter”. I therefore cannot support the amendment as it stands, but I am very happy to look at ways to take this forward and to meet my hon. Friend to discuss the amendment, which, quite rightly, gives special consideration to people with autism and learning disabilities. I know that my hon. Friend the Member for Penistone and Stocksbridge is also considering tabling amendments that would have a similar effect; perhaps we could all meet together.

I also reassure my hon. Friend the Member for Bexleyheath and Crayford that I am considering the involvement of people with learning disabilities, and groups representing them, in the development of guidance and training on assisted dying and end-of-life conversations. As Dan Scorer said,

“people with a learning disability should be involved in the development of that guidance” ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 281.]

I absolutely agree.

Amendment 368, tabled by the right hon. Member for East Hampshire, has been discussed this morning. I sought advice about it as it was new to me. I believe that no statutory guidance has yet been published under the Down Syndrome Act, so we lack detail. That Act resulted from another private Member’s Bill; I am sure we can all agree what an excellent process this is for making important changes to the law. As the Minister said, the amendment is likely to be unworkable for doctors so I cannot support it. I would, however, be very happy to discuss the thoughts of the right hon. Member for East Hampshire and look at how we can meet his objectives—possibly through an addition to new clause 8, which is about the duty to consult and the Secretary of State consulting with the Equality and Human Rights Commission. At that point, the specific needs of not just people with disabilities but those with other protected characteristics will be represented. Alternatively, we could look at the codes of practice in clause 30.

I am happy to take those discussions forward and may even be able to speak to the right hon. Member for East Hampshire at the drop-in session he is doing this week with the National Down Syndrome Policy Group, ahead of Down’s Syndrome Awareness Week.

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Simon Opher Portrait Dr Opher
- Hansard - - - Excerpts

Again, this is a really interesting part of the Bill. If a doctor is routinely giving prognoses of six months where that is not appropriate, they will come up against the General Medical Council for being poor doctors, and the regulation around poor doctors is within the medical profession. If it is proven that someone has given a diagnosis that they cannot back up in any way, they would then be subject to their own professional standards. That is one of the things here: we cannot go through this Bill and specify the medical requirements at every stage, because that comes under a different format, which is called the General Medical Council. If someone has given a prognosis of six months or less, and if that is clearly inaccurate and would be contested by other doctors, they would be brought before the General Medical Council.

Lewis Atkinson Portrait Lewis Atkinson
- Hansard - -

Does my hon. Friend agree that the provision of a further independent doctor assessment—both one and two—in addition to the doctor conducting the initial discussion, would provide a further safeguard for a diagnosis, if terminality could not be supported by other professionals?

Simon Opher Portrait Dr Opher
- Hansard - - - Excerpts

I absolutely agree. We are imagining that the doctors will all be independent and will not know anything about what other doctors have said, but there will be communication and access to medical records, and they will also tell the original doctor what their opinion is, and so on.

If we accept these amendments, we risk over-embroidering the Bill, which will make it almost impossible for doctors to say anything in a consultation. We must leave that free, because that is a central tenet of medical care, and if we put laws around it, there will be legal process over the medical consultation, and doctors will be frozen with fear about breaking the law. They are regulated by the GMC, and we are all terrified of referrals to the General Medical Council for that very reason: because we are trying to operate at the best standard that we can. I truly understand the amendments, but I do not think they will make the Bill any safer, and that is what we are all here for.

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Simon Opher Portrait Dr Opher
- Hansard - - - Excerpts

Sorry, Mr Efford. I do not deny that the hon. Member makes a good point, but if we embroider this too much, the Bill will not be safe. That has been the case throughout. Any good medical care is based on giving treatment, availability and the likely effects of that, and on giving prognosis and the chance of the prognosis being longer or shorter. That is all based in good clinical care.

On amendment 343, the uncertainties of estimates of how long a person has to live are covered in clause 2(1)(b):

“the person’s death in consequence of that illness, disease or medical condition can reasonably be expected within 6 months.”

“Reasonably” is part of the Bill. It suggests that one cannot say that the estimate is exact. The Bill does not say that it is exact; it says that it is a reasonable estimate of that person’s life. I think that takes care of that amendment.

In amendment 344,

“the risks and benefits of such treatment, potential side effects, and the impact of the treatment”

are covered by

“any treatment available and the likely effect of it”

in clause 4(4)(b). My general point is that none of the amendments are actually wrong; they are just unnecessary. I would like to leave it at that.

Lewis Atkinson Portrait Lewis Atkinson
- Hansard - -

I will be brief, as I am conscious that the Committee needs to make progress. I will speak briefly to amendment 275 in my name, which, as others have said, amends the current reference of “any available” to “all appropriate”. Listen—people at the end of their life deserve the best. They deserve to know about and have the option to access all appropriate care. In my experience of the NHS, that is exactly what clinical teams ensure patients get. But we need to guard against any suggestion that the information given should be somehow filtered around availability, which I know is not the intention of my hon. Friend the Member for Spen Valley.

In my experience, views on availability are often incorrect anyway, so ensuring that “all appropriate” options are offered in information is the best thing to do. If nothing else, it creates a level of societal pressure to ensure that all appropriate care is available, which I hope we can all support.

Naz Shah Portrait Naz Shah
- Hansard - - - Excerpts

Will my hon. Friend give way?

Lewis Atkinson Portrait Lewis Atkinson
- Hansard - -

No, I am going to make some progress because I am conscious of the time, and we want to get through these provisions.

I want to speak in favour of amendments 108 and 183. Those two amendments, taken together with amendment 275, create additional safeguards and assurances on the points made by colleagues on Second Reading that this is not cannot be raised in isolation—as my hon. Friend the Member for Spen Valley has made clear should not be the case—and that referral should always be offered to specialists in palliative and wider care.

As others have said, those patients will almost undoubtedly be in touch with a variety of different multidisciplinary healthcare teams. The suggestion that there must be a further referral to another multidisciplinary team under the Bill, regardless of which teams an individual is seeing, is therefore not appropriate. I also refer Members to amendment 6 to clause 9, which states that a referral to a psychiatrist “must” be made. My hon. Friend the Member for Spen Valley has indicated that she is in favour of that amendment. That reinforces the fact that there will be a multidisciplinary approach, including psychiatric input, where there is any doubt before the third-tier stage of the panel.

For those reasons, I do not feel the other amendments—285, 343 and so on—are necessary. By accepting amendments 275, 108 and 183, we will be able to strengthen the Bill in the way that was set out to the House, and as we heard in oral and written evidence.

Sojan Joseph Portrait Sojan Joseph (Ashford) (Lab)
- Hansard - - - Excerpts

I rise in support of the amendments, especially amendments 342 and 425. We have discussed various aspects of the Bill, especially capacity, coercion and medical practices, under many previous amendments. As somebody who worked as a mental health nurse for many years, and who worked as part of a multidisciplinary team, I think that amendments 342 and 425 are some of the most important.

Amendment 342 talks about the preliminary conversation with the medical practitioner with whom the patient makes contact. Do we not think that the doctor who knows most about that patient is the best person to have that preliminary discussion? They will have the most information about them. When the patient, who has gone through so much difficulty, goes to their doctor or to a GP who knows them well and says, “I would like to choose the assisted dying pathway,” would that doctor then say, “I do not want to discuss this. Somebody else will.”?

Terminally Ill Adults (End of Life) Bill (Seventeenth sitting) Debate

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Department: Department of Health and Social Care

Terminally Ill Adults (End of Life) Bill (Seventeenth sitting)

Lewis Atkinson Excerpts
Rebecca Paul Portrait Rebecca Paul
- Hansard - - - Excerpts

I thank the hon. Lady for that intervention, which I welcome.

Lewis Atkinson Portrait Lewis Atkinson (Sunderland Central) (Lab)
- Hansard - -

I will be brief. I am pleased to hear my hon. Friend the Member for Spen Valley confirm that she is minded to support amendment 341. It is incumbent on all of us, but perhaps particularly those in favour of the Bill, to place on record our appreciation and recognition of the fact that many people who work in our health services have strongly held religious beliefs, or beliefs of conscience—however they are motivated. As is the case for a range of other procedures and medical interventions, the law has to allow them scope to continue to practise. They make a valuable contribution to our health service and national life, and we should not do anything to impinge on that.

There is already strong guidance from the General Medical Council about personal belief, and that applies, as the hon. Member for Reigate mentioned, to the Abortion Act, as well as to the Human Fertilisation and Embryology Act 1990, the Female Genital Mutilation Act 2003 and other procedures. It is not for any of us to second-guess someone’s conscience.

Naz Shah Portrait Naz Shah
- Hansard - - - Excerpts

I would like to add that there is nothing about female genital mutilation in anybody’s religion. It is not a religious belief; it is cultural, and it is actually child abuse. That is what it is—there are no ifs or buts about it.

Lewis Atkinson Portrait Lewis Atkinson
- Hansard - -

I do not disagree with my hon. Friend. I gently say that the GMC guidance specifically references that Act, so that is what I was referring to.

I am pleased to see amendment 341, which I believe would bring the legislation into line with that GMC guidance, ensuring that removing the duty to refer would absolutely not be a licence for people to be left without access to care. The GMC is very clear, as the hon. Member for Reigate said, that people must be given sufficient information and be empowered to seek the options and information that they need. Therefore, I am pleased to support the amendment.

Daniel Francis Portrait Daniel Francis
- Hansard - - - Excerpts

It is a pleasure to serve under your chairmanship, Mr Dowd. I note that my hon. Friend the Member for Spen Valley has said that she is minded to accept amendment 341. I will, however, still briefly speak to amendment 338 and new clause 13, which stand in my name.

The British Medical Association has said that it strongly urges MPs to support the amendments, which would remove the referral requirement in relation to preliminary discussions and establish an official body to provide factual information to patients about the range of options available to them. As the hon. Member for East Wiltshire mentioned, Dr Green, in his oral evidence, said:

“The provision of information would be very useful, because in a situation where a doctor was unwilling to have an initial discussion with the patient, it would provide a way for the patient to get that information that was in no way obstructive.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 46, Q37.]

He went on to say:

“I do not believe that it is ever appropriate for a doctor to recommend that a patient goes through an assisted dying process.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 48, Q40.]

He also said:

“The word “referral”, to a doctor, means writing a letter or communicating with another doctor to see, but some doctors would find themselves not able to do that. For that reason, we believe that there should be an information service for the doctor to direct to.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 48, Q41.]

The BMA’s position is that the proposal is analogous to doctors’ professional legal obligations regarding abortion, and consistent with the Bill’s inclusion in clause 23 of a right to refuse, for any reason, to carry out activities directly related to assisted dying. It has said:

“In tandem, we believe creating an official body to provide individual information and advice to patients, to which doctors could direct (rather than refer) patients, would ensure that the doctor’s views are respected, whilst also—crucially—ensuring that patients can easily access the information and support they need. Currently, whilst the Bill acknowledges the need for accurate, impartial information and advice for patients, it gives no indication of how this might be delivered—generic published information would not be sufficient. Patients would need individual advice, guidance, and support so that they can make informed decisions, and an independent information service could meet this need.”

As the hon. Member for Reigate mentioned, a member of the Royal College of General Practitioners also said:

“The BMA referred to the word “refer”—referring to a colleague, for those who did not want to do it. We agree that signposting is a better process.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 279, Q365.]

He went on to say:

“Similar to other services, such as termination of pregnancy, we think that the best option would probably be that the GP could signpost to an information service, such as something like what the BMA suggested the other day. They would not have to do anything more than that, and they would not withhold any option from the patient.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 273, Q354.]

Therefore, I commend amendment 338 and new clause 13 to the Committee.

--- Later in debate ---
Sojan Joseph Portrait Sojan Joseph
- Hansard - - - Excerpts

As the hon. Member for Richmond Park says, we have repeatedly debated people’s mental health and how, once somebody has had a diagnosis of a terminal illness, it can have an impact on their decision making. Amendment 425, which we discussed earlier, is about having access to a multidisciplinary team. That team could have on it a social worker or a psychiatrist who would make a comprehensive assessment, which would cover amendment 271.

The amendment is an opportunity for the Committee to look into this issue, to make the Bill stronger, and to bring in safeguards for vulnerable people who may feel suicidal, and may feel a burden to society or to the healthcare system, and may choose this way. Those people who are vulnerable would have a psychosocial and mental health assessment, which would make the Bill stronger and safer.

Lewis Atkinson Portrait Lewis Atkinson
- Hansard - -

I rise to speak against the amendment; there are significant issues with it both in practice and in principle. In terms of practice, I draw Members’ attention to the fact that the amendment does not mention a psychosocial assessment; it mentions mandating “a psychosocial intervention”. As defined by the World Health Organisation, a psychosocial intervention can be as brief as five minutes. I know that it is a brief intervention: I used to manage services delivering psychosocial interventions. Nowhere in the amendment is the type of psychosocial intervention or its purpose specified. If Members hope that the amendment will lead to a psychosocial assessment—

Sarah Olney Portrait Sarah Olney
- Hansard - - - Excerpts

For clarity, if the amendment specified a psychosocial assessment, would the hon. Gentleman be minded to support it?

Lewis Atkinson Portrait Lewis Atkinson
- Hansard - -

The holistic assessment is already set out elsewhere in the Bill, so the amendment is not required. Amendment 275, which we made to clause 4, requires “all appropriate” psychological support to have been discussed with an individual in advance of the first declaration. I clearly supported that amendment, and I am very grateful that the Committee did.

From a practical point of view, amendment 271 talks about six months from the point of diagnosis, but if I had prostate cancer, I might have had prostate cancer for absolutely years—so is it six months from the point of being diagnosed with prostate cancer or six months from the point of being told that that is terminal? There are a huge range of practical issues with the amendment as currently written, but there are also issues regarding the principle as well.

--- Later in debate ---
Sarah Olney Portrait Sarah Olney
- Hansard - - - Excerpts

Would the hon. Gentleman not accept that a terminal illness in itself is a risk factor for an increased risk of suicide, and also that that risk is increased in the first six months following the diagnosis? That is the thinking behind the amendment.

Lewis Atkinson Portrait Lewis Atkinson
- Hansard - -

I accept that that is a risk factor, but it is by no means determinative. Therefore, that risk factor has to be considered in the round with other risk factors such as levels of family and social support. As set out, the amendment does not distinguish between someone receiving a terminal diagnosis by themselves without any support network, and someone who expects to receive a terminal diagnosis at the end of a very long illness. As a point of principle I do not accept that we should mandate psychosocial interventions or that people must receive a level of healthcare in order for them to access other options related to their care—let alone the practicalities, which I have laid out, about when the provision would apply in relation to diagnosis and the fact that it is an intervention, which is in no way an assessment or any such thing.

Stephen Kinnock Portrait Stephen Kinnock
- Hansard - - - Excerpts

I have made it clear throughout the debate that I am not offering a Government view on the merits of amendments. My remarks are focused much more on the legal and practical impacts of amendments, to assist Members in undertaking line-by-line scrutiny.

The amendments were tabled by the right hon. Member for South West Wiltshire. They would create a further eligibility requirement of the person seeking assistance under the Bill. Amendment 271 and 272 would limit those eligible to seek assistance to end their own life, in circumstances where their terminal diagnosis was received less than six months prior to the date on which the person signs the first declaration, to those who have received a psychosocial intervention. This would be subject to any exceptions provided for by the Secretary of State in regulations. Amendment 271 does not define what is meant by “received a psychosocial intervention” in relation to their diagnosis.

The term “intervention” is usually employed in the health service to mean the provision of support or treatment. This is different from, for example, an assessment that a clinician might undertake to assess whether an intervention may be required. While there is not a standard definition of psychosocial intervention, we understand it to mean psychosocial interventions such as cognitive behavioural therapy. The amendment could create uncertainty as to what type of treatment a person will need to undergo to satisfy the requirement. If a person who would otherwise seek assistance to end their own life under the Bill is unable to, or does not wish to, receive a psychosocial intervention, unless an exemption applies, they may need to delay starting the assisted dying process until at least six months has elapsed from their terminal diagnosis. That could be challenging in circumstances where the terminal diagnosis has a prognosis of six months or less.

The amendment would also introduce a requirement for people in certain contexts to undergo an intervention that could undermine a person’s autonomy in making their own treatment decisions. Were the amendment made, it would confer a regulation-making power on the Secretary of State to create exceptions to the proposed provisions on psychosocial intervention. Regulations made using this power would be subject to the affirmative procedure. It would also give the Secretary of State the power to issue a code of practice in connection with the form of the psychosocial intervention required.

If the Committee decides to accept the amendment, further consideration would be needed on Report to ensure that it is operationally deliverable, and my earlier comments about the definition of psychosocial intervention and other comments would have to be clarified. The Government would, of course, stand ready to assist were the amendment to pass.

As I said earlier, the Government have taken a neutral position on the substantive policy questions relevant to how the law in this area could be changed—as I have made clear, that is a matter for this Committee and for Parliament as a whole. However, I hope that these observations have been helpful, and thank the Committee for its attention.

Terminally Ill Adults (End of Life) Bill (Nineteeth sitting) Debate

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Department: Department of Health and Social Care

Terminally Ill Adults (End of Life) Bill (Nineteeth sitting)

Lewis Atkinson Excerpts
None Portrait The Chair
- Hansard -

I call Lewis Atkinson.

Lewis Atkinson Portrait Lewis Atkinson
- Hansard - -

Thank you, Mrs Harris—you really are giving the Minister some exercise during these long sittings.

Amendment 14 likens assisted dying to organ donation. I understand that an organ donor, before the point of independent assessment, has had no other independent assessment, which is in stark contrast to this Bill. The idea that, by failing to support this amendment, we are somehow adopting a weaker framework than for organ donation is patently false.

As the Bill sets out, there are already at least two assessments by independent doctors. As per the amendments we have already agreed, those doctors must have training, as specified by the Secretary of State, on the assessment of capacity and coercion. The rationale behind this amendment is already met, and it is significantly more strenuous than the framework for independent assessment in the event of organ donation.

Danny Kruger Portrait Danny Kruger
- Hansard - - - Excerpts

I am not sure that is right. The amendment insists that this referral and assessment should happen at the earliest stage possible, in the same way as for organ donation. One of the confusions of the Bill is that multiple different conversations could happen. The purpose is to ensure that this conversation with a psychologist or social worker, as per organ donation, happens at the very earliest opportunity.

Lewis Atkinson Portrait Lewis Atkinson
- Hansard - -

I disagree with the hon. Gentleman’s reading. The amendment talks about the co-ordinating doctor, as in the first independent assessor, and that is the case in the provisions we have already adopted. Clearly, the co-ordinating doctor may consult—and must consult, as per the amendment we are about to get to—psychiatric or other expertise, if there is any doubt in their mind. Amendment 14 would not bring forward that assessment earlier than elsewhere. I urge hon. Members to bear in mind that the idea that this proposal is somehow weaker than the current human tissue regulations is absolutely false.

On the point made by my hon. Friend the Member for Bradford West, the amendment does nothing to address coercion by a medical professional who knew the person beforehand. Under the amendment, it is by definition an independent person who has no prior relationship with the person.

None Portrait The Chair
- Hansard -

I call the Minister.

Terminally Ill Adults (End of Life) Bill (Twentieth sitting) Debate

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Department: Department of Health and Social Care

Terminally Ill Adults (End of Life) Bill (Twentieth sitting)

Lewis Atkinson Excerpts
Simon Opher Portrait Dr Opher
- Hansard - - - Excerpts

Has it? Okay. I thank my hon. Friend.

The amendments in this group all come from a good place, and I understand where hon. Members are coming from, but I do not feel that anything in them would make the Bill any safer or fairer for patients.

Lewis Atkinson Portrait Lewis Atkinson (Sunderland Central) (Lab)
- Hansard - -

It is a pleasure to serve under your chairship, Sir Roger.

I rise to speak to a couple of the amendments. Amendment 348 is likely unnecessary. I would have been minded to support it had it referred to a registered GP, but the language of “usual or treating doctor” is unconvincing. I am not sure what those terms refer to. The registered GP absolutely should be informed, and both normal practice and the provisions in the Bill about entering information into medical records would mean that that is the case. For me, “usual doctor” is not the right terminology; it does not achieve what I think some of its proponents want. With reluctance, I will vote against that amendment because it does not refer to a registered general practitioner.

On amendments 303 and 458, I believe there must be provision for a second opinion. However, I am persuaded by the points made by the hon. Member for Richmond Park about amendment 459. I slightly disagree with my hon. Friend the Member for Stroud: although the independence of the second opinion is important on matters such as the terminal prognosis, when it comes to the detection of coercion, the more information, the better. It is one thing to be independent in a medical assessment, but the amendment speaks to a psychosocial assessment. We are trying to detect coercion, so it is important that every decision maker gets further information as the process progresses.

The provision for five different touchpoints of assessment is one of the strengths of the Bill. Each assessment should be done in a way that can be progressed with more information. It is not just five different independent points of information; because of the Bill’s record-keeping provisions, the assessment should become increasingly informed throughout the process. I certainly think that the panel, or whatever we get to, should have sight of any negative assessment from an independent doctor, as well as any positive one. The panel will then be able to do its job of scrutinising the two decisions, potentially weighing them up, and calling the different doctors who have given different decisions. I am, then, persuaded by amendment 459.

Jake Richards Portrait Jake Richards (Rother Valley) (Lab)
- Hansard - - - Excerpts

It came up in the debates last week that we heard some evidence from medical practitioners on how decisions and assessments were better made when done collaboratively. That means that we need to keep them independent but that, where possible, doctors should be working together in this process. Does my hon. Friend agree that amendment 459, tabled by the hon. Member for Richmond Park, may assist in that?

Lewis Atkinson Portrait Lewis Atkinson
- Hansard - -

Yes, I do. I recognise the importance of independent assessment for prognosis and capacity. However, particularly with the issue of coercion, healthcare is a team sport, as anyone who has worked in healthcare knows. The more information and the more viewpoints we can get in those instances, the better. One of the strengths of the Bill is the team sense around it, which we will further in the amendments to clause 12 that we will come on to in due course.

I will finish briefly on amendment 460. I do not see the loophole that has been described. I think we would all want someone to be able to cancel their first declaration, and they are more likely to do so if they feel they have the option of going back and making a future first declaration. My worry with amendment 460 is that, by removing the word “particular”, it suggests that people are only able to make one first declaration in the course of their life. With the periods of reflection built into the Bill, which Members spoke about earlier, if someone changes their mind, they should cancel their first declaration. They are absolutely free to do so and the Bill, as currently drafted, makes good provision for that. To me, amendment 460 would remove the ability for that person to come back to that decision at a later point and go through the assessment process again. While I understand the motivations behind amendment 460, I am cautious about it for those reasons.

Stephen Kinnock Portrait Stephen Kinnock
- Hansard - - - Excerpts

Amendment 348 seeks to add an additional requirement to clause 8(5). This would mean that, where the independent doctor is satisfied that the requirements under clause 8(2) have been met, they must

“inform the person’s usual or treating doctor and, where relevant, the doctor who referred the person to the independent doctor, of the outcome of the assessment.”

Some elements of amendment 348 duplicate requirements that already appear in the Bill, such as the requirement in clause 8(5)(b) for the doctor to inform the co-ordinating doctor of the outcome, including providing a copy of the statement.

The amendment would also overlap with the requirements in clause 16 for the co-ordinating doctor to make entries in the person’s medical record that must include the original statement or declaration. Where the co-ordinating doctor is not with the person’s GP practice, they must also give notice to a registered medical practitioner with the person’s GP practice of the outcome of the assessments.

Amendment 303 seeks to prevent a person from seeking multiple second assessments from different independent doctors. It places a requirement on the independent doctor to confirm

“that no other practitioner has undertaken a second assessment for the same person.”

This amendment creates the risk of a medical practitioner inadvertently committing an offence if there is no centralised record-keeping. It may also have the impact of preventing the person seeking assistance from obtaining a second opinion, as provided for in clause 10. Under the amendment, as drafted, it is unclear how this is intended to interact with the possibility of an independent doctor’s becoming unable or unwilling to continue to act as the independent doctor following the second assessment, when an alternative independent doctor may therefore be required.

On amendment 458, as the Bill stands, clause 10 provides that if, following the second assessment, the independent doctor refuses to make the statement confirming that they are satisfied that matters in clause 8(2)(a) to (e) are met, the co-ordinating doctor may refer the person to a different registered medical practitioner who meets the requirements of clause 8(6), and is able and willing to carry out an assessment mentioning clause 8(2). The effect of the amendment is to restrict the circumstances in which the co-ordinating doctor can make a referral under clause 10(1) to a different registered medical practitioner to only when there has been a material change of circumstances. It is not clear from the amendment who is required to establish that there has been a material change in circumstances and/or how that will be proved. That may cause some uncertainty for the co-ordinating doctor.

I now turn to amendment 459. Clause 10 provides that if, following the second assessment, the independent doctor refuses to make the statement that they are satisfied that the person meets the criteria in clause 8(2)(a) to 8(2)(e) when conducting the second assessment, the co-ordinating doctor may, if requested to do so by the person who made the first declaration, refer that person to a different registered medical practitioner who meets the requirements of clause 8(6) and is able and willing to carry out an assessment of the kind mentioned in clause 8(2).

The effect of the amendment is that, where such a referral is made to the registered medical practitioner under clause 10(1), the co-ordinating doctor is required to provide them with the report by the independent doctor setting out their reasons for refusal. If the new registered medical practitioner reaches a different conclusion from the original independent doctor, they must produce a report setting out why they disagree. The two reports must be made available to any subsequent decision maker under the Bill, and to the commissioner. This additional requirement for reports on the reasons for refusal or differences in opinion may make the process of seeking assistance longer and add to capacity demands on co-ordinating and independent doctors.

Turning to amendment 460, clause 10(3) provides that if, following the second assessment, the independent doctor refuses to make the statement mentioned in clause 8(5), the co-ordinating doctor may make one referral for a second opinion. The effect of the amendment is to remove the word “particular” from clause 10(3), which says that only one second opinion may be sought

“In consequence of a particular first declaration made by a person.”

The amendment is unclear and could have several possible effects in practice. For example, it could have the effect of limiting the circumstances in which a referral can be made under clause 10(1) to the first time a person makes a first declaration.

I hope that these observations were helpful to the Committee.

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Lewis Atkinson Portrait Lewis Atkinson
- Hansard - -

Does the hon. Member share my concern that the wording in medical records has no duration over a person’s lifetime? For example, consulting all the medical records of someone in their 70s or 80s at the end of their life would surely include the records from when they were a child—childhood vaccinations, the removal of tonsils and so on—and that would clearly be impractical. Does he not agree that amendment 201 would clarify that element?

Danny Kruger Portrait Danny Kruger
- Hansard - - - Excerpts

What the amendment clarifies is that the doctor does not have to look at any records at all unless he or she considers them relevant. It gives total discretion to the doctor to disregard huge swathes of the patient’s history. Yes, I do expect the doctor to review the entirety of a patient’s record—obviously, the record of a childhood broken leg can be skipped over quickly. What I do not want to do, as the Bill currently does, is allow the doctor to say, “Oh, I missed this evidence of a mental health condition” or “this indication of coercion from five or 10 years ago, because I didn’t consider that aspect of their records to be relevant.” It places a significant obligation on the doctor, but that is, I am afraid, what we are doing in the Bill. We are placing huge obligations on doctors and we should do it properly.

Danny Kruger Portrait Danny Kruger
- Hansard - - - Excerpts

As I have said in my many exchanges with the hon. Gentleman, I want to see the good practice that he claims—absolutely accurately, I am sure—to perform is applied across the system. He says that if doctors see in the summary some indication of concerns, they will look more closely into it. Well, I jolly well hope they would. The problem is that the summary might not be complete. I suppose the distillation of my point is that we should say, “Don’t rely on the summary. Proceed with a proper analysis. Take responsibility for making sure that you have reviewed the entirety of the patient’s record.”

We have to address throughout our consideration of the Bill the workload that we are placing on busy professionals. Nevertheless, if we consider that this matters—and it is a question about knock-on effects on the NHS, which we could discuss in due course—it is appropriate to expect proper time to be taken. A specialist with two hours and a full record in front of them might spot the misdiagnoses, question the prognosis, flag the depression and catch the abuse. If given half the time and a licence to skim the record, as the amendment would give them, they could very easily miss something, so I think the word “relevant” is a great gamble.

Lewis Atkinson Portrait Lewis Atkinson
- Hansard - -

The hon. Member is discussing amendment 201, but there is also amendment 422, which indicates that the professional should make inquiries of other healthcare professionals who have been involved in treatment recently. Does he not agree that that would mitigate against the sort of scenario he describes?

Danny Kruger Portrait Danny Kruger
- Hansard - - - Excerpts

I will come on to that. I agree with him: amendment 422 is a very helpful amendment, and I support that. It is a very good suggestion that wider consultation should be made, and it is a point that we have been trying to make with amendments throughout. I recognise that that would enhance the safeguards in the Bill—I am grateful to the hon. Gentleman.

Amendment 422 seeks to introduce an additional requirement that the assessing doctor must consider whether to consult health or social care practitioners who are providing, or have recently provided, care to the patient. The amendment is presented as addressing previously expressed concerns, but I regret to say that I feel it is excessively weak. It is a positive step in recognising the issue, but it does not ensure a broader and more informed assessment of a patient’s condition and external influences.

Patients with terminal illnesses often receive care from palliative care teams, social workers or community nurses who might have crucial insights into their wellbeing and the potential external pressures on them. The British Psychological Society has highlighted that mental health and social pressures are often overlooked in assisted dying requests in other countries. Social workers and allied health professionals play a key role in assessing whether a patient feels pressurised due to financial, social or familial burdens. As I have repeatedly said and we will debate further in due course, in my view it is very important that that assessment comes earlier in the process.

We have evidence from doctors—I will not cite it at length—pointing out that independent doctors who refuse assisted dying requests are often ignored, and patients are simply referred to another doctor willing to approve the request, as we have discussed. Consultation with health and social care professionals could act as an additional safeguard against that practice. Although the amendment introduces an obligation to consult other professionals, it leaves it to the discretion of the assessing doctor. It relies on the doctor’s subjective judgment

“if they consider that there is a need”.

I think that is too weak for assisted dying, where consistency is so critical. One doctor might consult a palliative care specialist to explore pain relief options, while another might not, assuming that they understand the patient’s suffering sufficiently. The variability in the Bill—this discretion—undermines fairness and safeguarding.

There is also a lack of accountability in what is a very sensitive process. There is no requirement to document the consideration process, which weakens oversight in a context where errors could be fatal. I respect the point made by my right hon. Friend the Member for North West Hampshire that we must not police conversations and that being prescriptive may encourage a tick-box approach. I am afraid that we risk that tick-box approach if this amendment is all that we do on this subject. We can imagine a scenario in which a doctor simply makes a note in the record with little underpinning substance.

There is also no obligation to act on the specialist input, so the duty ends at the consultation. There is no requirement to integrate the findings of the additional input that the doctor has received, which is a glaring flaw in what is an irreversible procedure that is being authorised. Finally, there is insufficient rigour for the ethical stakes. This discretionary duty is too weak to catch the difficult cases.

Terminally Ill Adults (End of Life) Bill (Twenty-second sitting) Debate

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Department: Ministry of Justice

Terminally Ill Adults (End of Life) Bill (Twenty-second sitting)

Lewis Atkinson Excerpts
Rebecca Paul Portrait Rebecca Paul
- Hansard - - - Excerpts

My hon. Friend makes a good point; I completely agree with him on that front. This goes back to being clear on the face of the Bill about what the panel does and the powers it has in order to avoid ambiguity. It is important that we set that out now, during this process, rather than finding ourselves in a position in two years where it is all starting to happen, if the Bill is approved, and the questions starting at that point. Let us try to answer them now and be really clear about it.

Where a panel does not hear directly from a patient, it may be forced to rely on second-hand accounts. In law, second-hand evidence is known as hearsay and is always handled with a lot of provisions and warnings across our criminal and civil legal systems, because it can be inaccurate or of lower quality than evidence directly from a source. However, the panel is open to depending on such evidence. We must be clear-eyed about the risks that come with that.

In summary, I do not believe that new clause 21 gives sufficient clarity on how the panel will perform its role and what evidential standard it would apply. We do not know if it is an administrative task or a judicial one. We do now know that the panel is inquisitorial—I thank the Bill’s promoter for that—but we do not know how much it will rely on hearsay evidence in practice. I will say this again, because it is really important: the panel is required to hear from only one doctor and does not need to question them. Under the Bill, would it be legally acceptable for the doctor to turn up, say, “No concerns”—and that’s the end of that? I am here to tell Committee members who think that that will not happen if the Bill allows it: somewhere, with some panel, it absolutely will—particularly as our society gets desensitised and more comfortable with the concept of assisted dying.

I urge the Committee to be precise with the legislation it is passing for the sake of the statute book and, more importantly, for the sake of all the people who may find themselves being assessed by such a panel.

Lewis Atkinson Portrait Lewis Atkinson (Sunderland Central) (Lab)
- Hansard - -

The hon. Lady sketches out a very short exchange. Does she think that we should specify in primary legislation the exact nature of interactions in these sorts of matters elsewhere—in the High Court, employment tribunals and so on? In my understanding, we do not: we trust regulated professionals to have appropriate interactions. It is not for Parliament to say that a lawyer or doctor should ask x or y question. Does she agree?

Rebecca Paul Portrait Rebecca Paul
- Hansard - - - Excerpts

I am afraid I do not agree. I do not think that we should not put in place precise legislation because we trust that everyone will do the right thing. Our job as lawmakers is to always think about the worst possible situation that could arise and legislate accordingly to protect against that as best as possible. In 99 cases out of 100, it will work perfectly fine and people will do their job as they are meant to. The point I am trying to draw out is about exactly what the Bill says, and what it says is required is actually very little. The panel is required to “hear” from only one of the doctors. I still do not know what “hear” means. Exactly what content are they meant to provide? That is the point I am making. It is important that we make legislation for the worst-case scenario. That is our job.

Lewis Atkinson Portrait Lewis Atkinson
- Hansard - -

I am not going to pursue that exact line of argument. The point of discussion, and the point of the vote, is whether we think this proposal, which, to me, is robust—the panel “must hear” from doctors and “must…hear” from the patient unless there are exceptional circumstances, and three professionals are involved—is stronger than the previous draft that involved the High Court and had no such requirements. Even if the hon. Lady does not think the new clause is perfect, does she think it is a stronger set of safeguards—surely it is—and will she support it?

Rebecca Paul Portrait Rebecca Paul
- Hansard - - - Excerpts

Again, I am not sure I agree that that is what I am here to do today. I think my job is to set out the strengths and weaknesses of the proposed amendment, and I do think that the High Court judge safeguard, on the face of it, was probably safer. I appreciate, value and truly welcome what the new clause attempts to do by bringing in psychiatrists and social workers, but it has come in at the wrong phase of the process. I am not sure we are really getting the value of that expertise at the judicial point; we would have got that value at the clinical stage.

I ask Members to take what I am saying in the good faith that it is meant. My intention is to make sure that the Bill is as safe as possible. I do not profess to have all the answers, but I do have questions, and sometimes it is useful to ask questions, because there are others here who can answer them. I hope that, by asking questions when we are uncertain whether something is the right way forward, we will get a stronger piece of legislation.

--- Later in debate ---
Daniel Francis Portrait Daniel Francis
- Hansard - - - Excerpts

Yes, I am aware of some of those submissions from those individuals. I will come to this, but clearly even some people who were in support of making changes did not recommend the ones that we have now incorporated.

First, I would argue that people giving evidence to the panels should be doing so under oath. In my 20 long years as a local councillor, I gave evidence under oath to an investigation by a health and safety executive into the demolition of a building. I would say that the demolition of a building and this matter are very different, and therefore I query why this evidence is not being given under oath.

Lewis Atkinson Portrait Lewis Atkinson
- Hansard - -

My hon. Friend is making a thoughtful speech. Has he had the chance to consider the situation with mental health tribunals that I mentioned yesterday, which usually do not take evidence under oath? Clearly, they make very serious decisions regarding sectionings and deprivations of liberty without invoking oath-taking powers.

Daniel Francis Portrait Daniel Francis
- Hansard - - - Excerpts

I accept what my hon. Friend says, but there are differences of opinion. I accept that that is a very serious matter, but I would argue that a matter of life and death is more serious, and there are processes that we know. As I said, I gave evidence under oath about the demolition of a building and whether someone had followed the correct health and safety regulations, yet we would not be doing so in this case.

Terminally Ill Adults (End of Life) Bill (Twenty-third sitting) Debate

Full Debate: Read Full Debate
Department: Ministry of Justice

Terminally Ill Adults (End of Life) Bill (Twenty-third sitting)

Lewis Atkinson Excerpts
Danny Kruger Portrait Danny Kruger
- Hansard - - - Excerpts

I greatly respect the position that the hon. Lady has come to. She has been persuaded that this is an improvement on the Bill, and I respect that. I recognise that that is what the hon. Member for Spen Valley and others think, but I am afraid I do not accept that the process has been adequate. The hon. Member for Penistone and Stocksbridge cites Justice Munby and others who criticised the High Court proposals. I also have my criticisms of them—I think they were inadequate—but the response to that is not to scrap them all together, but to strengthen them, as Justice Munby suggested. The hon. Lady will know that Justice Munby is not supportive of the new proposals either; he thinks they also fail the essential test of being an effective safeguard. Nor does the new proposal—the panel—provide the opportunity for evidentiary investigation, which would indeed be appropriate if we were to have a proper safeguard at this stage. I respect the hon. Lady’s position, but I am not persuaded.

None Portrait The Chair
- Hansard -

Order. I remind Members that, as I said at the start, interventions should be short, and not speeches.

Lewis Atkinson Portrait Lewis Atkinson
- Hansard - -

The hon. Gentleman says that the way to proceed would have been to strengthen, through amendment, the existing High Court safeguard. I may have missed them, but I cannot see amendments in his name that do that, so will he explain what strengthening of the High Court safeguard he would prefer?

--- Later in debate ---
As a number of Members have said, people want assisted dying as a card in their back pocket. They want it as a sense of insurance and security against pain and agony at the end. A large proportion of them will not use it. Striking that balance is critical. After much discussion and work, I think the hon. Member for Spen Valley has done just that, so I will support her.
Lewis Atkinson Portrait Lewis Atkinson
- Hansard - -

I rise to respond to some of the points made by the hon. Member for East Wiltshire. I looked back on the Hansard report of the Second Reading debate and his position there, and I am somewhat confused. In his speech in that debate, he was entirely dismissive of the judge as a safeguard, but now, in Committee, he seems to have had a Damascene conversion in favour. That gets to the question of whether, as others have asked, there are any safeguards that would satisfy opponents of the Bill in principle.

I entirely respect the position of principled opponents to the Bill.

Danny Kruger Portrait Danny Kruger
- Hansard - - - Excerpts

I look forward to hearing the hon. Member’s substantive remarks, but in explanation I should say that there are no safeguards that I think will make an assisted dying Bill adequate. I will oppose the Bill whatever happens because I think it would be dangerous for people however we do it. But if we are going to do it, let us do it as safely as we can. There are definitely ways in which we could improve the safety of the Bill, which have been suggested in the many amendments I have supported.

On the point about the judicial stage, I am very critical of clause 12 as it stands because it does not provide sufficient rigour and there are major questions about the capacity of the judiciary, as has been discussed. But the principle is absolutely right. It is important that, if we are going to do this, we have a judge to make the final decision. I was not satisfied with the Bill as presented, but I think we should be building on it, rather than reducing the judicial safeguard.

Lewis Atkinson Portrait Lewis Atkinson
- Hansard - -

I thank the hon. Member for that point, but when someone cannot describe any version of safeguards that would be possible, and in the light of some of the other conversations we have had, one is led to believe, entirely respectfully, that some people are opposed to the Bill in principle in any instance.

The point that my hon. Friend the Member for Spen Valley made on Second Reading that this was the safest model in the world was not just about the fact that there was a judge, but about the fact that there was a third tier. That is not something that is in place in Oregon, or even in Australia, as we heard in evidence. Now, not only are we going to have a third tier of scrutiny, but we are going to have three professionals who must unanimously accept that the strict conditions for eligibility have been reached. I absolutely refute the suggestion that amending away from a High Court model and towards a panel model means that we have to recant any suggestion that this is the strongest model in the world.

Naz Shah Portrait Naz Shah
- Hansard - - - Excerpts

Will my hon. Friend give way?

Lewis Atkinson Portrait Lewis Atkinson
- Hansard - -

I am going to continue this point, if I may.

The hon. Member for East Wiltshire asked what the purpose of the panel is. As is set out very clearly in new clause 21, it is about determining eligibility for assistance, with reference to the stringent rules and conditions that we will lay out in the Bill. The hon. Gentleman went on to ask about the purpose of the judge and suggested that it is a bureaucratic role. As new clause 14(4)(c) makes clear, the commissioner’s role is making arrangements for panels, and new schedule 2 is clear that the commissioner has powers to give guidance about the “practice and procedure” of those panels. Clearly, the commissioner will be a judicial figure with experience of proper process and procedure, and it is absolutely right that that person, who will set out the procedure for each of the panels, is a judge.

The hon. Gentleman made a point about MDTs. I am not sure whether he has worked in or around healthcare, as I and other members of the Committee have, but I say gently that the suggestion that individuals at the end of their lives are not in contact with multiple professionals is highly implausible. We are blessed in this country that we have some of the best cancer nursing in the world, and that we have palliative care social work. He previously asked which bodies had come out in support of this change. Well, the Association of Palliative Care Social Workers says:

“The inclusion of social workers as core members of these panels shows that Kim Leadbeater and her colleagues have taken on board our arguments that social workers are uniquely qualified and equipped to undertake the complex and sensitive tasks of assessing mental capacity and safeguarding individuals who may be subject to any form of undue influence or coercion.”

Naz Shah Portrait Naz Shah
- Hansard - - - Excerpts

Will my hon. Friend give way on that point?

Lewis Atkinson Portrait Lewis Atkinson
- Hansard - -

No, I am in a flow, so I am just going to keep going. I am mainly rebutting at this point, and I do not want to open the debate that much wider.

Invariably, we already have individuals at the end of their lives with multidisciplinary input that is appropriate to them, and we have heard already how the independent doctors and the panels will rightly seek input from all those involved in care.

It has been some time since the hon. Member for East Wiltshire and I had an exchange on our difference on the ventilator test, but I know that we have a fundamental, philosophical difference on that. I believe that a dying person saying, “Please, doctor, turn off my ventilator; I want to die,” is not fundamentally different from that person saying, “Please, doctor, let me take that medicine; I want to die.” I assert that the person in the street is closer to my view of that situation than to his, although I respect that people have different philosophical opinions about it. However, let us not forget that we sometimes conduct this debate about the correct oversight of the third tier in a theoretical manner, as if these people were not dying anyway, and as if deaths relating to refusal of treatment, and suicide, were not happening anyway.

Danny Kruger Portrait Danny Kruger
- Hansard - - - Excerpts

Let us not rehash the argument about whether there is a difference between withdrawing treatment and actively killing somebody or giving them the opportunity to kill themselves. On the point about withdrawal of treatment, does the hon. Member acknowledge that when there is dispute over whether somebody should have their treatment withdrawn, it goes to a court and there is representation from both sides of that argument about whether the treatment should be withdrawn? If he is saying that these measures are essentially identical in principle, surely we should have the same mechanism to resolve disputes.

Lewis Atkinson Portrait Lewis Atkinson
- Hansard - -

I thank the hon. Member for his intervention, but I am afraid he is confused. It goes to the Court of Protection when the individual is not capable of making that decision and there is a dispute about what the best-interests decision may be for that individual. That is entirely different from the dying person saying, “Please turn off my ventilator.” In that case, the Mental Capacity Act 2005 applies, as we have discussed at length in the Committee, but there are no further checks for coercion, capacity or motivation in the way that has been described. With the three panel members, we will now have at least five professionals, who must all be satisfied that there is no coercion. How many individuals should there be?

I see speculation, including on social media, about the number of people who might seek an assisted death and who may be subject to coercion. How many people who refuse treatment at the moment, without any of those checks, are subject to coercion? How many people who go to Switzerland, or who end their own lives, are subject to those checks? We do not know because we have no robust oversight of those instances. While I have absolute sympathy with the points raised by my hon. Friend the Member for Bexleyheath and Crayford, who made a very thoughtful and personal speech, as he always does, the exact same instances that he described would be permissible right here and now.

The hon. Member for Reigate shared some upsetting stories, I think from Canada, about the impact on family in speaking to the amendments on that subject. First, I point out that Canada’s system is nothing akin to the one that we are proposing, because it does not have the third-tier protections that my hon. Friend the Member for Spen Valley proposes in the Bill.

However, it is also important that we bring the debate back to talking about dying people here in the UK, and that we have some of their voices and experiences, and their families, in the room. We know that already, 650 terminally ill people end their own lives each year in the UK. Anil Douglas’s dad, Ian, took his life the day before his 60th birthday. He was in the terminal stages of multiple sclerosis, and he ended his own life without notifying his family, because he felt he had to protect them, due to the state of the current law. He managed to obtain opioids from the dark web and subsequently overdosed. In his final note, he wrote:

“I would like to have to put on record that had we had more sympathetic assisted-dying laws in this country, in all probability I would still be alive today.”

I will give one more example. On returning home from a trip to London, Peter Wilson discovered his wife, Beverly, dead in their home. She had terminal oesophageal cancer and had taken her own life, alone at their home in Nottinghamshire, when she knew that Peter would be 120 miles away. Even though Peter could prove that he was not present at the time of death, he was questioned by police for seven hours, and he was fingerprinted and photographed within hours of her death. That is the current situation that families—those we have discussed maximising care for—are facing in the UK. That is why we need a change in the law that includes robust, third-tier oversight.

Terminally Ill Adults (End of Life) Bill (Twenty-fifth sitting) Debate

Full Debate: Read Full Debate
Department: Department of Health and Social Care

Terminally Ill Adults (End of Life) Bill (Twenty-fifth sitting)

Lewis Atkinson Excerpts
Simon Opher Portrait Dr Opher
- Hansard - - - Excerpts

I think there is some truth in that, to be fair, but I believe we should leave it open to the family’s discretion, with the proviso that the doctor should be close at hand, whether that means outside the door or whatever. We need Government advice on whether amendment 429 is safe. I have nothing further to say.

Lewis Atkinson Portrait Lewis Atkinson (Sunderland Central) (Lab)
- Hansard - -

It is a pleasure to serve under your chairship, Sir Roger. I will cover a few of the amendments, and follow on from my hon. Friend the Member for Stroud, whose points I broadly agree with.

When it comes to the location and, actually, a lot of the elements, I fear we are trying to over-specify practical matters. As in so many cases, this is not about capacity, coercion, assessment and so on; it is about the practicalities of death, and it is right that we allow the healthcare team for dying people and their families to operate with the professional skill with which they currently operate.

On amendment 429, on the doctor being in the same room, I can think of many instances in healthcare in which a healthcare professional is in an adjoining room, potentially even with a door open so there is a line of sight, and that is entirely appropriate. I think of observations, for example, in various settings. That provision is absolutely necessary and allows an appropriateness of proximity without intrusion. I am sure the doctor will be in the room at the point at which the substance is taken, but if someone then goes into unconsciousness fairly quickly, as would happen in the vast majority of cases, and then takes half an hour or so to die, it is entirely unnecessary for a doctor to be standing there in the same room, towering over the family, when they could be near at hand. I just do not think we need to specify that in the Bill.

I have some sympathy with amendments 532 and 533, tabled by my hon. Friend the Member for Ipswich, on the Secretary of State setting out regulations, but I fear the hon. Member for East Wiltshire did an excellent job of persuading me that they should not be accepted, because when a “must” is included in that way, we get into saying, “The Secretary of State must tell a doctor exactly what they must do in every situation.” The legal parameters are clearly set out in the Bill as drafted. There is no administration by a doctor on a person’s behalf; it must all be self-done. Additionally, we have not yet mentioned the existing provisions in clause 9(2)(c), which requires, at the point of assessment, a conversation between the assessing doctor and the patient about their wishes in the event of complications or any sort of delay.

Jack Abbott Portrait Jack Abbott
- Hansard - - - Excerpts

I appreciate what my hon. Friend is saying about the Secretary of State not stipulating every dot of every i and cross of every t in the regulations, but we are talking about something that has not been practised in this country, so we do not have existing guidance anywhere about what to do in this event. My hon. Friend may correct me, but I think it is really important that the Secretary of State has to give some direction through regulations on what a doctor is able or not able to do in these situations. I appreciate that there must remain room for a doctor’s best-case judgment in certain situations but, from a legal perspective and otherwise, the Secretary of State and the Department will have to give some thought to exactly how the regulations work.

Lewis Atkinson Portrait Lewis Atkinson
- Hansard - -

To me, amendment 430, tabled by my hon. Friend the Member for Bexleyheath and Crayford, strikes the right balance. Under clause 30 the Secretary of State “may” make provision for codes of practice on these matters if that is required; I am uncomfortable with saying that the Secretary of State “must” do so, when it is likely that it will be more appropriate for the GMC or some other body to make those regulations. We get into a difficult precedent if the Secretary of State must specify the reaction in certain medical circumstances but we routinely leave that to medical regulation and practice more widely. I think a “may” power, as set out in amendment 430, would allow that backstop provision, but would not get into the issue of “must”. It is also likely to be more respectful of the conversations as outlined in clause 9.

Sarah Olney Portrait Sarah Olney
- Hansard - - - Excerpts

I am listening to what the hon. Gentleman is saying, and a lot of what he is talking about in terms of giving doctors discretion makes a lot of sense in a routine medical intervention, but this is not a routine medical intervention. This is a very serious point, and the doctor’s judgment in this case could well fall either side of what is permissible by the law. That is why it is so important that it is really clear. Whether we decide in Committee that it must be on the face of the Bill, or whether we want, as per the hon. Member for Ipswich’s amendment 532, to leave it to the Secretary of State, it must be clear and specific.

Lewis Atkinson Portrait Lewis Atkinson
- Hansard - -

I think the Bill is very clear on the legal parameters. A doctor may not act, in terms of administering the substance, in a way to hasten death. Within that, we are back into the realms of normal medical practice, as my hon. Friend the Member for Stroud set out. I am sure that there will be legal guidance, whether that be from the GMC or elsewhere, if and when the Bill were to pass. The Secretary of State would have the powers anyway under clause 30, but for the avoidance of doubt, amendment 430 strikes the right balance in giving backstop permissions to the Secretary of State to clarify anything if needed.

Kim Leadbeater Portrait Kim Leadbeater
- Hansard - - - Excerpts

On the hon. Member for Richmond Park’s point, which a couple of people have made, I do not think anyone is saying that this is not a new situation—of course it is, as we are all aware. My hon. Friend the Member for Stroud’s point was that a doctor being with a patient who is dying is not a new situation. That is the important distinction.

--- Later in debate ---
Lewis Atkinson Portrait Lewis Atkinson
- Hansard - -

My hon. Friend is absolutely right and articulated that better than I was managing to.

Danny Kruger Portrait Danny Kruger
- Hansard - - - Excerpts

We are not necessarily talking about someone who is dying right here and now in consequence of the drugs they have taken—we could be talking about someone who is many months away from their death. The scenario we are envisaging is that fatal drugs —poisonous drugs—have been administered to the patient’s body and we are asking doctors to be normal doctors in that scenario. In a genuinely normal scenario of doctors being doctors, they would attempt to revive the patient and to save their life in that circumstance. If the parallel is with the last moments of someone’s natural death, the doctor’s job is simply to make them comfortable, but that it is not the scenario. The scenario is some months away from their natural death, when they have months to live. They may not even be exhibiting extreme illness—they may just have a terminal disease. If they have been given fatal drugs, what on earth is the doctor to do in the scenario where the drugs are not working? Surely that is a question for all of us, rather than just leaving it up to the doctors.

Lewis Atkinson Portrait Lewis Atkinson
- Hansard - -

I disagree. As clause 9 makes clear, the doctor will have had a conversation with the patient about their wishes in advance, in exactly the same way as a surgeon would have a conversation with a patient in advance of high-risk surgery—

Lewis Atkinson Portrait Lewis Atkinson
- Hansard - -

I am not going to take any further interventions; I am going to answer this point and make some progress.

The surgeon would say, “If this procedure fails, would you wish me to attempt resuscitation? Would you wish to be put on a support system?” The hon. Gentleman misunderstands current practice on consultation with patients, in advance of procedures, about their wishes, which is where there is significant established evidence.

Lewis Atkinson Portrait Lewis Atkinson
- Hansard - -

I am going to finish on this point.

On amendment 533, tabled by my hon. Friend the Member for Ipswich, I suspect that, in dealing with a later clause, we will have a conversation about issues around hospices and care homes, but again I find the requirements under the amendment unduly onerous. As my hon. Friend the Member for Stroud and others have said, often people’s preferred place of death is at home. Are we really saying that the Secretary of State would specify addresses or the nature of places where these procedures should take place?

Jack Abbott Portrait Jack Abbott
- Hansard - - - Excerpts

No, is the short answer to that question. Because a doctor has to be present, are we saying that doctors have to go to someone’s home to administer this? Would the Secretary State say, for example—this is not my personal view; it is for discussion—that it would have to take place in a medical facility, or could people choose to have an assisted death at home? The amendment stipulates that the Secretary of State would have to give that guidance at the time. I do not see how we can have doctors going out to individuals’ homes to assist the process.

Lewis Atkinson Portrait Lewis Atkinson
- Hansard - -

It is by no means clear that doctors would not go out to people’s homes, but my hon. Friend asks whether doctors would have to do that—there are no powers of compulsion anywhere in the Bill, because the entire model is an opt-in model at every stage, including the example he gave in respect of hospices. It is a matter between the resident of the home and the treating medical practitioner.

In reality, healthcare procedures do not happen ubiquitously: they happen in appropriate places with appropriate cultural sensitivity. We do not specify in primary legislation for that to happen. Health professionals, and those involved in the management and commissioning of health services, currently have ample opportunities to co-ordinate and consider such matters.

Jack Abbott Portrait Jack Abbott
- Hansard - - - Excerpts

I appreciate my hon. Friend giving way again. For people in the Committee and our colleagues across the House, there has to be clarity. Perhaps it is a question for the Bill promoter’s and the Government. As I said, I have no personal problem with it, but is there an expectation that assisted dying will take place at home as well as in medical facilities?

Lewis Atkinson Portrait Lewis Atkinson
- Hansard - -

I cannot speak for the Bill’s promoter or for others, but a significant number of people wish to die at home.

Kim Leadbeater Portrait Kim Leadbeater
- Hansard - - - Excerpts

I can help my hon. Friend out on this point. There is an expectation in the jurisdictions where assisted dying happens that it happens in different locations, very much centred around the patient’s wishes, which is the approach we should take.

Lewis Atkinson Portrait Lewis Atkinson
- Hansard - -

That is exactly right. That will quite possibly include people’s individual homes as well as not in their homes, in places of appropriate care and peace and tranquillity.

Kit Malthouse Portrait Kit Malthouse
- Hansard - - - Excerpts

The hon. Member might be interested to know that many hospices and, in fact, the hospice movement have developed what they call hospice at home, which is for people in the advanced stage of illness who want to die in their own home. Services are provided to them to palliate them as they reach death at home.

Lewis Atkinson Portrait Lewis Atkinson
- Hansard - -

The right hon. Gentleman is absolutely right. Another point we have not yet mentioned is that the Care Quality Commission regulates healthcare on the basis of location of delivery. Hospice services cannot just be provided from a random place: the place has to be registered with the CQC as suitable for the provision. I am sure that regime would continue in this instance.

Stephen Kinnock Portrait Stephen Kinnock
- Hansard - - - Excerpts

Amendment 435 would require the co-ordinating doctor to escalate the care of an individual to the appropriate emergency medical services if the assisted dying procedure has failed. Requiring the co-ordinating doctor to make a referral may engage article 8 of the European convention on human rights—the right to family and private life—if the person has indicated that they do not wish to be referred to emergency services or do not wish to be resuscitated. In a situation where the procedure has failed, doctors would, as in their normal duties, support a person in line with their professional obligations and their understanding of the person’s wishes. This could include the involvement of the emergency services, but it would be unusual to specify a particular approach in legislation.

As currently drafted, clause 18(9) provides that:

“The coordinating doctor must remain with the person”

once the approved substance has been provided, until either

“the person has self-administered the approved substance and…the person has died, or…it is determined by the coordinating doctor that the procedure has failed”,

or, alternatively, until

“the person has decided not to self-administer the approved substance.”

Amendment 429 would remove the clarification currently provided for in clause 18(10) that the co-ordinating doctor does not have to be

“in the same room as the person”

once the approved substance has been provided. However, clause 18(9) requires the doctor only to

“remain with the person”.

It may still be possible that the co-ordinating doctor could remain with the person but in a different room if they decide that is more appropriate.

Amendment 436 would increase reporting obligations on the co-ordinating doctor in cases where complications have occurred. It is not clear in the amendment what would be considered a complication and therefore trigger the reporting requirement. It is also not clear what details should be set out in the person’s medical records or in the report to the chief medical officer and voluntary assisted dying commissioner.

Terminally Ill Adults (End of Life) Bill (Twenty-sixth sitting) Debate

Full Debate: Read Full Debate
Department: Ministry of Justice

Terminally Ill Adults (End of Life) Bill (Twenty-sixth sitting)

Lewis Atkinson Excerpts
None Portrait The Chair
- Hansard -

I remind the Committee that with this we are discussing the following:

Amendment 483, in clause 23, page 15, line 5, after “assistance” insert

“, or in any activity closely related to the provision of assistance,”.

This amendment would widen the range of activities which medical practitioners and other healthcare providers are not under an obligation to provide to include activities closely related to the provision of assistance under the Act.

Amendment 484, in clause 23, page 15, line 8, after “Act” insert

“, or in any activity closely related to the provision of assistance under this Act,”.

Amendment 441, in clause 23, page 15, line 9, at end insert—

“(3) There is no obligation on any care home or hospice regulated by the Care Quality Commission or the Care Inspectorate Wales to permit the provision of assistance under this Act on their premises.”

This amendment prevents there being any obligation on a care home or hospice which is regulated in England or Wales to permit the provision of assistance under the Act on their premises.

Amendment 481, in clause 23, page 15, line 9, at end insert—

“(3) Nothing in subsection (2)—

(a) prevents an employer who has chosen not to participate in the provision of assistance in accordance with this Act from prohibiting their employees from providing such assistance in the course of their employment with that employer, or

(b) prevents an employer from specifying occupational requirements in relation to the provision of assistance in accordance with this Act in accordance with Schedule 9 of the Equality Act when hiring employees.”

This amendment ensures that employees cannot provide assisted dying against the wishes of their employers and that employers can still rely, in appropriate cases, on the occupational requirements of the Equality Act to either require employees to provide or not to provide assisted dying.

New clause 22—No obligation for occupiers and operators of premises—

“(1) Any individual, business, organisation, or association who occupies or operates premises has the right to refuse to permit the self-administration of an approved substance on their premises.

(2) Nothing in subsection (1) confers any right on anyone with an interest in the land but who is not occupying or operating those premises.”

This new clause would mean that the owners or occupiers of premises—but not landlords not currently in occupation—are not obliged to permit the self-administration of approved substances on their premises.

New clause 23—No detriment for care home or hospice not providing assistance—

“(1) No regulated care home or hospice shall be subject to any detriment by a public authority as a result of not—

(a) providing assistance in accordance with this Act, or

(b) permitting such assistance to take place on their premises.

(2) No funding given by a public authority to a regulated care home or hospice can be conditional on that care home or hospice—

(a) providing assistance in accordance with this Act, or

(b) permitting such assistance to take place on their premises.”

This new clause would mean that regulated care homes and hospices cannot be subject to any detriment for not providing or permitting assistance in accordance with this Act, and that their funding cannot be conditional on them providing or permitting such assistance.

Clause stand part.

Lewis Atkinson Portrait Lewis Atkinson (Sunderland Central) (Lab)
- Hansard - -

It is a pleasure to serve under your chairmanship, Ms McVey, fortified as I am now with a touch of breakfast.

I wish to open my comments on this set of amendments by reiterating the importance of respecting people’s beliefs in healthcare and the contribution that people of different faiths, beliefs and positions make, no matter where they come from, in the context of the activities under the Bill.

I accept and recognise that amendment 480, in the name of the hon. Member for East Wiltshire, would do an important job in strengthening the Bill’s provisions. I obviously want to hear what the Minister says, and I note the comments from my hon. Friend the Member for Spen Valley, but I would want to see this sort of expansion in the final Bill when it goes back to the House. If they may not be the exact right words today, I repeat the offer that my hon. Friend has made to work across the divide, as it were, to ensure that such provisions are included in the Bill.

With the benefit of an overnight reflection, I feel that last night we got somewhat muddled around some of the objections on conscience, particularly when we go beyond the individual. Amendment 480 and equivalent amendments deal very clearly with individuals not having an obligation to carry out acts that would offend their conscience in the provision of these services. I think we can broadly agree on that. The remainder of the debate got rather muddled between organisations providing assistance under the Bill and the locations at which the final act of an assisted death may take place. I think those are importantly different.

On organisations providing assistance, I want to reset things with a common-sense approach to how it will work in practice. The hon. Member for Reigate made the point that hospices should be under no obligation as organisations to provide specific services. I agree. The powers set out under clause 32 for the Secretary of State to make arrangements for the provision of these services, which we will come on to debate at some point, will operate as they do elsewhere across the health service. An NHS organisation or another organisation will say, “This is the set of services that we provide as an organisation.” I see nothing in this Bill that will compel them to do anything other than that. Healthcare organisations up and down the land now make decisions about what is appropriate for them to deliver, based on skills, expertise and demand and whether they think they are well placed to provide care.

I agree with the hon. Member for Reigate, but it does not follow that the amendments are required to enforce that principle. As I understand it, because it is permissible, every organisation and every individual practising healthcare professional will be able to say, “On my own bat, I’m not going to participate in this, regardless of what my employer believes,” not least because of clinical governance and regulation. There is already a strong body of healthcare regulation around the acts and services that are provided. It is currently overseen by the Care Quality Commission. We do not need to reinvent that regime.

I reassure Members that I think it entirely appropriate for hospices or other providers of palliative care to consider whether they want to participate, should the Bill become law. I imagine we will get to a situation in which some will and some will not, which is absolutely appropriate. Particularly in end-of-life cases, a patient will make a choice on the back of that. I am aware that some end-of-life care providers in my area are actively considering whether this is something that they will do; I am equally aware that there are others that think it is not for them. We heard in evidence that in Australia some providers of palliative care provide integrated, holistic care in which it is one of a number of options, whereas other providers do not.

Amendment 481 would insert a new subsection (3)(a) into clause 23, which suggests that an employer has the power to veto an employee doing an act on their time. That is moot: it is not necessary. In the healthcare environments in which I have worked, a doctor may practise elsewhere, doing their own thing, but while they are employed in a certain NHS trust to do an NHS service, they cannot suddenly decide to do something else.

Rebecca Paul Portrait Rebecca Paul (Reigate) (Con)
- Hansard - - - Excerpts

The hon. Member is giving a powerful speech. My amendment is only to ensure that if the employee is working in an NHS clinic, they comply with the policy of that clinic. It would not restrict their doing other things in their own time. The wording of the amendment is clear, as I discussed with the hon. Member for Spen Valley yesterday, that it is just while the employee is performing services for the employer.

Lewis Atkinson Portrait Lewis Atkinson
- Hansard - -

I agree that that is what the wording says, but my point is that it is moot. The hon. Lady herself states that the amendment is to prevent an employee from going against the policies of the employer. That power already exists. No healthcare professional says, “Even though I’m employed as a doctor today by such and such a trust, I’m going to do a set of procedures or practices that I want to do.” It is moot.

I have no issue with subsection (3)(a) in amendment 481, although I think it is unnecessary. However, I think subsection (3)(b) is deeply problematic. It cuts across employment law protections by referring to selection when hiring employees. There is a reference to the Equality Act, but as others have noted, it is not clear what protected characteristics we are talking about. At a deeper level, if we accept that there is going to be mixed provision, I would argue—and I think this Committee, in a small way, has shown this—that there is some benefit to that. We should not get to a position where every medic of a certain viewpoint on assisted dying works for one organisation and every healthcare professional of a different viewpoint works for another.

That is not to say, by any stretch, that organisations would be forced to offer assisted dying. Clearly they would not. If the Bill becomes law, however, I want a society that is relatively at peace with it in healthcare, recognising people’s ability to conscientiously object as individuals. Setting up a dichotomy from the start, in which where a medic decides to work is determined by their views on such and such a procedure, is not a road that we should go down. I also have serious concerns, in terms of employment law, about subsection (3)(b).

Rebecca Paul Portrait Rebecca Paul
- Hansard - - - Excerpts

The amendment is simply to prevent a discrimination case. Let us take another example. A rape refuge may provide services to women who have suffered sexual abuse; it may be appropriate, in that instance, to hire only women to support those domestic abuse survivors. In order to prevent a discrimination claim when hiring, we have to rely on the Equality Act and the exemptions carved out. All my amendment says is that the same exemption would apply when a hospice or clinic is employing. It is just to avoid those issues down the road.

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Lewis Atkinson Portrait Lewis Atkinson
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I am afraid I cannot agree. The situation that I set out, in which a hospice makes an organisational decision that it does not wish to provide assisted dying services, is entirely legitimate under the Bill, as drafted. I do not, however, think it should screen which applicants have a certain view, which would be legal under the amendment. The example that the hon. Lady gives is rather different, because it relates to a particular protected characteristic. I am not an expert in the area, so maybe colleagues can help me, but this relates to specific services.

Danny Kruger Portrait Danny Kruger (East Wiltshire) (Con)
- Hansard - - - Excerpts

Will the hon. Gentleman give way?

Lewis Atkinson Portrait Lewis Atkinson
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I will move on, because we have started slightly late and I am not sure that we are going to add anything on this point.

There is a fundamental distinction between providing assistance and being the location in which people may self-administer an assisted death. In his speech on new clause 22, the hon. Member for East Wiltshire somewhat overlapped those two things, if I may say so. Having established that a hospice would be under no obligation to provide, an individual would clearly not be able to turn up and say, “Your staff must help me to do this.” However, that is different from a situation in which someone living in their own private home— that might include a room in a care home or sheltered accommodation—decides that they want their healthcare team to carry out entirely lawful and appropriate activities under the Bill.

I therefore cannot agree with new clause 22. People are legally resident in these premises. They are registered to vote. In some cases, such as in warden-provided accommodation, they have a lease. It is not a landlord in absentia. I know that the hon. Gentleman has provided an opt-out for some situations, but what about warden and supported housing situations? We would not accept operators or owners policing what lawful activities should happen in someone’s own home within that environment. That is entirely different from the situation that the hon. Gentleman sketched out, in which everyone has to be involved. There would be no obligation whatever on any staff of that establishment to participate in an ancillary manner or otherwise, but in a private residence, such as someone’s room in a care home, we cannot allow that to be prohibited.

Danny Kruger Portrait Danny Kruger
- Hansard - - - Excerpts

As always, the hon. Gentleman is making a helpful and intelligent speech, and I appreciate the distinction that he is trying to draw. There is a lot to say, and I will respond more when I wind up, but does he think that it would be an acceptable condition of a lease—or whatever the living arrangement is for residents of sheltered accommodation or shared places—for the operator to specify that no assisted dying shall be performed in those premises, and for that to be a condition of coming to live there?

Lewis Atkinson Portrait Lewis Atkinson
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My instinct is that it would not. If the Bill becomes law, it would be a lawful choice. The hon. Gentleman may not characterise it as healthcare, but it would be part of healthcare and end-of-life services. We would not accept such stipulations on other healthcare services. I can see a sketch that some may choose to draw; someone mentioned housing supported by a religious institution. The reality is that people do not go out of their way to offend, and they try to live in harmony with those around them. If people are clear that they might actively explore assisted dying as an option, they will not choose to spend their last days in a community where others are ideologically opposed to their choice; it would be uncomfortable for the individual. They would, however, have the legal right to do so.

Kit Malthouse Portrait Kit Malthouse (North West Hampshire) (Con)
- Hansard - - - Excerpts

Having also thought about this overnight, I think there is a freedom-of-association argument. If it were a Roman Catholic organisation designed just for Roman Catholics to live in, such as a home for retired priests, or if it were a Jewish organisation just for Jewish residents, I could see that, but that is not a service that is generally on offer to the public. My concern is whether we could see a situation in which the board of trustees of Hampshire hospitals foundation trust has a majority of people who have a strong religious conviction, and they vote that the service shall not be provided across the three hospitals that the trust manages. If the provision is drawn tightly and the freedom-of-association argument could be made, I could see it. Having said that, there is no institutional objection power in law for abortion: people just do not offer it because they do not have the staff to offer it. It feels to me as though that is what the hon. Gentleman is pointing to.

Lewis Atkinson Portrait Lewis Atkinson
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That is entirely right. The response of public bodies such as NHS trusts is a slightly different issue. I would not want to speak for the Government or imagine what the Secretary of State might say, but it would be inconceivable to me for a quasi-independent public body to decide, on a vote on principle by some local governors, not to offer citizens choices that have been enshrined in law. That is a slightly different point, but I am grateful to the right hon. Gentleman.

The hon. Member for East Wiltshire suggested yesterday that if someone chooses to have an assisted death, everyone in the care home or wherever would be part of it. That fundamentally misunderstands the point; I will go for “misunderstands” rather than doubting his intentions, but some would see it as scaremongering. No one is asking for the right to do it in a communal area, where staff or neighbours are forced to observe or participate in any way. Where people live in their own home, they should have rights and dignity at the end of life, whether that is in a care home or in a private residence. We cannot deny them the choice to access end-of-life options, as set out in the Bill. I therefore cannot support new clause 22.

Rachel Hopkins Portrait Rachel Hopkins (Luton South and South Bedfordshire) (Lab)
- Hansard - - - Excerpts

Does my hon. Friend agree that, given patient confidentiality, it is highly unlikely that other residents of a care home would even be aware?

Lewis Atkinson Portrait Lewis Atkinson
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That is entirely possible. Clearly it is up to the individual concerned to discuss how far they wish to share with neighbours or friends, in the home or elsewhere, but we must not get to a situation in which, as a policy default, someone’s intentions at end of life are broadcast within a certain radius. My hon. Friend is entirely right and helpful in making that point.

Jack Abbott Portrait Jack Abbott (Ipswich) (Lab/Co-op)
- Hansard - - - Excerpts

I do not want to go over ground that we covered in the later hours of yesterday, but this is sort of the issue that my amendment 533 sought to resolve, albeit via regulations rather than in the Bill directly. I am sure that our colleagues on the Front Bench will be doing some thinking about it. As the hon. Member for East Wiltshire alluded to, in some situations the question of place—of where we will be able to carry out these procedures—is not black and white. I fully appreciate what my hon. Friend is saying, which is that if someone chooses to end their own life in their own home, they should be able to do so. In some cases, however, the Government will need to give further thought to the issue of place. I think that is really important.

Lewis Atkinson Portrait Lewis Atkinson
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In considering the offer of any health or care-related activity, the appropriateness and suitability of the place is always in people’s mind, and clearly that varies. As I mentioned yesterday, we already have a licensing regime under which the CQC specifically licenses places for particular activity. I think my hon. Friend is right, but this is a normal part of decision making in the provision of health services and I do not think we should try to constrain it in primary legislation. However, as I started by saying, I recognise that we must enshrine the rights of individual conscientious objectors, which I think the hon. Member for East Wiltshire is trying to do with amendment 480, and I hope that we can do that, through some route, with the Bill.

Naz Shah Portrait Naz Shah (Bradford West) (Lab)
- Hansard - - - Excerpts

I rise to speak to amendments 441 and 484, tabled by my hon. Friend the Member for York Central (Rachael Maskell), and in support of new clause 23, tabled by the hon. Member for Reigate.

Amendment 441 would amend clause 23 so that there would be

“no obligation on any care home or hospice regulated by the Care Quality Commission or the Care Inspectorate Wales to permit the provision of assistance under this Act on their premises.”

I think it is clear that “assistance” in this context means the act of administering lethal drugs. That is the sense in which the word is used in clause 18, for example.

Amendment 484 would tighten that restriction somewhat by providing that there is no obligation on any hospice to permit

“any activity closely related to the provision of assistance under this Act”.

New clause 23 would also apply to all regulated care homes and hospices in England and Wales. It would provide that none of those organisations can

“be subject to any detriment by a public authority as a result of not—

(a) providing assistance in accordance with this Act, or

(b) permitting such assistance to take place on their premises.”

The new clause would also provide that no public authority can make its funding for a regulated care home or hospice dependent on the care home or hospice agreeing to provide assisted dying or to allow assisted dying to take place on its premises.

All the amendments have the same goal: to ensure that the Bill does not harm this country’s hospices. We have heard from many witnesses how much hospices do in providing palliative and end-of-life care. Caring for people who are close to the end of life is difficult and vital work. The people who do that on our behalf include some of the very best in our society. We should all hold ourselves responsible for not making the task of hospices more difficult. The idea that the Bill might do that has been raised with us by people working in this country’s hospices.

Hospice UK takes a neutral position on whether assisted dying should be legal in England and Wales, but it has set out clear positions on how the Bill should and should not affect hospices. On funding, its written evidence TIAB 36 states:

“If assisted dying is legalised and becomes part of the health service, steps should also be taken to ensure there is no financial detriment to any hospice, whatever their positioning on the practice.”

I agree strongly with that argument, for several reasons. The hospice sector in this country receives a mixture of public funds and private or charitable money, including donations and the proceeds of charity shops and fundraising events. Like the rest of the population, the people who work in and run hospices have a mixture of views on assisted dying. Many have strong objections on various grounds. If public funds were made dependent on hospices agreeing to assisted dying taking place, we would see several things happen, all of them bad.

In evidence to the Committee on 28 January, Dr Sarah Cox, a consultant in palliative care and president of the Association for Palliative Medicine, said:

“I am also concerned about our palliative care workforce, which we know is already in crisis. Eighty-three per cent. of our members told the Royal College of Physicians in 2023 that they had staffing gaps, and more than 50% were unable to take leave because of those staffing gaps. Forty-three per cent. said that if assisted dying were implemented within their organisation, they would have to leave. This has a massive impact on palliative care, in terms of its potential to develop both our funding and our workforce, who are really concerned about this.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 70, Q83.]

In evidence to the Committee on 29 January, Toby Porter, chief executive officer of Hospice UK, said:

“If hospices were involved in assisted dying, there is a theoretical risk that that would just reinforce an inaccurate perception about hospice and palliative care: the myth that you are helped along your way by doctors in hospices and hospitals. That is one risk.

More briefly, the second risk relates to the duty of care. What do you need for hospice and palliative care services? You need adequate resourcing, which means staff and finances. In terms of staff, the real fragility in the hospice and palliative care sector is a shortage of clinical staff—that is shared nationally with the NHS and other healthcare providers.”

Mr Porter also mentioned the evidence of Dr Cox. He told us:

“You will know from Sarah Cox’s evidence that the majority of palliative care consultants hold views against assisted dying, many of them very strongly. If the consultants felt, for example, that they could not keep their distance from assisted dying in a 12-bed hospice unit in the way they could in an 800-bed hospital, you could very easily see that if this was not done properly and the consultants deserted the hospice sector, you could no longer offer the specialist care that is so important to the Minister, the NHS and every health and social care provider.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 196, Q256.]

Many people would be entirely willing to enter a care home or hospice if they thought they might receive assisted dying there, but others already fear that they might be pressured into taking assisted dying if they enter palliative care. They may be wrong to fear that, but they do. We heard evidence on that point from Dr Jamilla Hussain, who gave evidence to the Committee on 29 January:

“I work predominantly with an ethnically diverse population. I have gone into those communities and I have spoken to them about this Bill. What they say overwhelmingly to me is, ‘We’re scared. We’re really fearful that this is going to result in a disproportionate impact on our community. We have seen that through covid and we’re so scared. We already don’t access your services. We’re really worried that we won’t want to access them any more, and we won’t want to access the hospitals.’”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 187, Q245.]

That fear will only grow if we use public funds to oblige hospices to permit assisted dying on their premises. Hospices should be able to say clearly to their patients that they do not allow assisted dying to take place on their premises. The dedicated professionals who work in hospices and who deeply object to people being helped to die with lethal drugs must also be protected. They should be free from having to work on premises where something they might disagree with happens.

I anticipate that some hon. Members may argue that amendment 484 draws its restrictions too tightly. They might argue that it would mean that a doctor working on a hospice’s premises or making a visit to a patient in a hospice could not have the preliminary discussion about assisted death with that person. However, I want to be clear that these measures relate to the provision of assistance under this Bill. “Provision of assistance” is the phrase used throughout the Bill to refer not to the preliminary discussion, nor to the interviews with doctors, nor to the panel process, but to that part of the process at which the person takes lethal drugs with a doctor present.

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Lewis Atkinson Portrait Lewis Atkinson
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I just want to nail this point about employers and recruitment. We have said that no organisation will be obliged to provide these services, in exactly the same way as with abortion. The example I would give is this: a provider of women’s services says, “We are not providing abortion. But, in addition, we are going to ask staff members we are recruiting if they believe it is ever legal for abortion to take place.” That is exactly the same test of belief, although on a different medical procedure, that my hon. Friend is proposing in this instance.

Naz Shah Portrait Naz Shah
- Hansard - - - Excerpts

That is not what I am saying. I am saying very clearly that when we recruit people to any job, we ask them to have the values that we have as an organisation. I appreciate my hon. Friend’s intervention, but what he says is certainly not the point I am trying to make, and I cannot imagine anybody—even for religious reasons, and even if they have changed their position—genuinely treating somebody in that way. We just do not do that.

Terminally Ill Adults (End of Life) Bill (Twenty-seventh sitting) Debate

Full Debate: Read Full Debate
Department: Ministry of Justice

Terminally Ill Adults (End of Life) Bill (Twenty-seventh sitting)

Lewis Atkinson Excerpts
Danny Kruger Portrait Danny Kruger (East Wiltshire) (Con)
- Hansard - - - Excerpts

I was just concluding my remarks on the amendment. I will quickly finish responding to the hon. Member for Spen Valley and others, who suggested that it would be improper to deny people living in a care home, hospice setting or other communal environment the right and opportunity to request assisted dying. I was suggesting that that right needs to be tempered by an acknowledgment that they do not live there alone, and that there are also rights, properly held, by the occupier of the premises, the individual’s neighbours and others.

My concern is that, just as suicide itself is contagious, so the practice of assisted suicide will have social ramifications. We fully recognise that, if the Bill is passed, people will have the absolute right to request the service in their own home, but when someone is living among others, that right needs to be tempered by the consideration that the occupier should ultimately decide whether he or she is prepared to allow the practice to take place on his or her premises.

Some hon. Members suggested that, if an institution receives public funding, it would be appropriate for it to be obligated to deliver the service. I am concerned about the implication of that, which might be that institutions that did not wish to provide or facilitate assisted suicide but did receive public money, for instance care homes or hospices, would be at risk of losing that money—essentially being defunded—on the grounds of their conscientious objection to participating in assisted dying. I would be grateful if the hon. Member for Spen Valley or Ministers would confirm that it is not their intention to penalise bodies that do not deliver assisted dying by withdrawing public money.

On the impact on staff, I am grateful to the hon. Lady for acknowledging that we might need to tighten the Bill to ensure that it is clear that people will not be required to participate in any stage of the process of assisted dying, and not just in the actual provision of assistance towards the final act. Nevertheless, my concern is that if we do not give institutions the right to opt out of provision, there will be an exodus of staff who object to being involved in any way with, or working for an institution that facilitates, assisted dying, as has happened in other jurisdictions where assisted suicide is legal.

I point particularly to evidence we heard from Australia. We were told that, in consequence of assisted dying being legalised in Australian states, there was an exodus of workers from the healthcare system—nurses and others—and the social care system. It was therefore no coincidence when one of the Australian witnesses who supports assisted suicide declared breezily that, although there were significant objections among the care workforce to the introduction of assisted dying when the law was first debated, five years later there was overwhelming support for assisted dying among them. Well, that is no surprise, because all the objectors had left, and I am afraid that is what we will see here.

A comparison would be the exodus of care workers that we saw after the last Government mandated covid vaccination. Some 40,000 care workers left their jobs rather than accept compulsory vaccination. If they were prepared to do that on those grounds, I fear we might see a similar phenomenon if we mandate that institutions facilitate assisted dying.

Lewis Atkinson Portrait Lewis Atkinson (Sunderland Central) (Lab)
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May I check that the hon. Member’s understanding is the same as mine—that nothing in the Bill compels an organisation to participate in the way that he describes?

Danny Kruger Portrait Danny Kruger
- Hansard - - - Excerpts

No, I am afraid I do not concede that. At the moment, it is not apparent from the Bill or the amendments that have been accepted that an organisation would be enabled to decline to facilitate the provision of assisted dying. No organisation will be compelled to do so, but if a resident were to request assisted dying in their care home, my understanding is that the care home would be obliged to facilitate it.

It might well not be the intention behind the Bill, because I know that the hon. Member for Spen Valley and Members who agree with her recognise the importance of a conscience exception; they have been very clear on that, and I am grateful to them. Nevertheless, my concern is that on human rights grounds, as we have heard from the Minister, the likelihood is that there would be a claim on behalf of an applicant against the institution they reside in that assisted suicide must be provided to them in that place. I am afraid the Bill at the moment does not give an adequate exemption to institutions.

Lewis Atkinson Portrait Lewis Atkinson
- Hansard - -

Does the hon. Member accept the distinction that I made between an organisation choosing to provide assisted dying services and the instance he outlined of this being done in someone’s home that happens to be a care home? They are entirely different points, and I fear that, particularly with regard to hospices, he is conflating the two.

Danny Kruger Portrait Danny Kruger
- Hansard - - - Excerpts

I am conflating the two because they are conflated in reality. A care home where somebody lives is a residence, but it is also a community, a facility and a place where professionals work to support that individual. A clear demarcation between their living arrangements and the support they receive from the institution they live in does not exist in reality. That is why they are living there—because that distinction does not apply in their particular case. They require the support and help of the workers in the place where they live.

I am afraid it is not enough simply to say, “This is their home, and they should have exactly the same rights and freedoms as they would have if they were living alone in their own flat or house.” We have to recognise the reality of the situation, which is that they are living in a community, and what happens in the community affects them all. That is the nature of communal living. This is not individualised healthcare in the way that the hon. Gentleman imagines it is, and that is fundamentally our point of difference. This is separate or adjacent to healthcare, and it is delivered, by definition, by somebody else. By virtue of the Bill, it would have a separate regulatory environment to other healthcare treatments. Of necessity, it should have an appropriate legal framework to protect other people who are impacted by assisted death in a communal setting. That is my crucial point: if someone is living in a communal setting, what they do affects their neighbours.

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Danny Kruger Portrait Danny Kruger
- Hansard - - - Excerpts

It is an honour to follow my hon. Friend the Member for Reigate; I very much agree with the points that she made, and I hope that Ministers will respond. I will try not to repeat her arguments.

The hon. Member for Spen Valley says that clause 24 is, in a sense, the heart of the Bill. I agree. Without the clause the Bill would be ineffective, because the service that we are proposing to legalise would be illegal. We have heard many objections to the term “assisted suicide”, but the necessity of the clause exposes the fact that what is being legalised, at least in part, is assisted suicide. Calling it assisted suicide is therefore not improper; it is simply using the correct terminology, as I believe we should in this place. That is particularly important because the use of the euphemism “assisted dying” masks what this is really about and what the Bill would actually legalise: that somebody could help somebody else to commit suicide.

It is no surprise that the euphemism is deployed, because support for what is called assisted dying is driven in part by a failure to realise what it actually is and what the words mean. I cite a 2024 Nuffield Council on Bioethics survey of the public, which found that 39% of people think that assisted dying means withdrawing life support, 19% think that it means providing people who are dying with drugs that relieve symptoms of pain or suffering, and 13% think that it means providing hospice care, all of which is legal currently and is good medical practice.

Lewis Atkinson Portrait Lewis Atkinson
- Hansard - -

The hon. Gentleman says that he is clear that those actions are assisting suicide and that he thinks that they are illegal. Is it right that members of the public, in the instance to which my hon. Friend the Member for Spen Valley referred, be investigated by the police on their return from trips to Switzerland?

Danny Kruger Portrait Danny Kruger
- Hansard - - - Excerpts

Let me come to the question of investigation by the police in due course, but I am not sure that the hon. Gentleman heard me clearly. I was not talking about offences that I think are rightly criminal; I was talking about offences that are not offences at all. Providing hospice care, helping people to relieve symptoms of pain or suffering and withdrawing life support are all perfectly permitted and legal in our system. The issue is that a significant proportion of the public think that those activities are what assisted dying entails. I do, however, recognise the point and the power of the testimony recited by the hon. Member for Spen Valley, to which I will come on in due course.

I understand that in order to make the Bill effective, an exception must be made to section 2 of the Suicide Act. Section 1 says that someone is allowed to commit suicide; section 2 says that one cannot help somebody else to do so. I agree that such an exception is necessary if we are to pass the Bill, but I cannot follow why clause 24(1) is needed. I will be grateful if the hon. Member for Spen Valley or the Minister can explain which other offences would necessarily be committed by a doctor properly carrying out his or her functions under the Bill. What other offences might be caught that require clause 24(1)?

Clause 18 will forbid a doctor from engaging in euthanasia. One criminal law from which an exemption is not necessary is the law on murder, yet ostensibly subsection (1) has no such limitation. I would be grateful for the Minister’s confirmation that subsection (1) will not afford a defence when the charge is murder. I presume that that is not the intention.

What about manslaughter, and particularly gross negligence manslaughter? Under the Bill, a pharmacist performing the function of prescribing or dispensing the legal drugs would be, to use the wording of amendment 504, “performing” a “function under this Act”. If a pharmacist makes a grossly negligent mistake and mislabels a drug, which is then sent to another patient who takes it and dies, that would quite clearly be gross negligence manslaughter. Can the Minister explain why clause 24(1), as amended by amendment 504, would not allow someone to benefit from an immunity in respect of gross negligence manslaughter? To be clear, I agree that if the pharmacist intentionally mislabelled the drug, he could not be described as

“performing any other function under this Act”,

so he would not have that defence. However, in a case where, in good faith, he had made a fatal and grossly negligent mistake, surely he would have been performing such a function, albeit performing it very badly.

Can the Minister clearly set out the reasoning to explain why there is no chance of such a defence under the clause? Of course the hon. Member for Spen Valley does not intend to exempt from criminal liability a pharmacist acting in that grossly negligent way, but I am trying to make sense of the drafting of the amendment. If there is any criminal offence, other than in the Suicide Act, that requires an exemption, it would be best to say so clearly in the Bill rather than relying on a catch-all term, as subsection (1) does.

I concur with the points made by my hon. Friend the Member for Reigate and will not repeat them, but I do find it interesting that the hon. Member for Spen Valley has chosen to retain the offence of assisting and encouraging suicide. This is because two arguments made by proponents of the Bill lead to the logical conclusion that the offence should either be repealed entirely or limited to self-conduct, as is the case in Switzerland. Let us look at the two arguments in turn.

The first argument relates to autonomy. If an autonomous individual with capacity decides to end their own life and requests the assistance of another person, why should that other person be criminalised? After all, that person is simply helping another person to do something to their own body that the law has not prohibited since 1961, so surely it is a violation of autonomy to criminalise such conduct of assisting in suicide.

Lord Mance, a former justice of the Supreme Court, put the matter as follows on Second Reading of the Meacher Bill in the other place:

“Suicide is decriminalised, yet assisting suicide remains criminal—probably a unique exception to the principle that you can only be an accomplice to an act that is itself criminal.”

It is bizarre that the act is not itself criminal but being an accomplice to it is. Lord Mance went on to say:

“If a person may choose freely to commit suicide, what justifies a refusal to allow them to obtain willing assistance?”—[Official Report, House of Lords, 22 October 2021; Vol. 815, c. 408.]

I believe in the value of a prohibition on assistance, but the logic of the argument from autonomy—that someone should be allowed to request assistance to help them to die—surely obviates the distinction. I do not see why we have kept section 2 at all, and I would be interested in hearing from the supporters of the Bill what the limiting principle is. Why do they think assisted suicide should remain a crime, despite its being a limitation on autonomy, outside the scheme created by the Bill? Why are we simply creating a scheme within the Bill?

The second argument given, which I think relates to the intervention from the hon. Member for Sunderland Central and to the point made by the hon. Member for Spen Valley, is based on the fact that the current law requires people to travel to Switzerland. The argument against the current system comes in three forms. One stresses the toll that it places on families to know that the people who assist have committed a criminal offence and could be investigated by the police, even though the chances of prosecution are remote. I fully recognise and share all the concerns among Members about the terrible distress faced by people who may in any way have assisted their loved one to take their own life.

The second objection to the status quo makes the point about the unfairness that the situation creates. The hon. Member for Liverpool Wavertree (Paula Barker) said on Second Reading:

“I do not want choice to be available only to those who can afford to pay. That is not just or equitable.”—[Official Report, 29 November 2024; Vol. 797, c. 1073.]

The suggestion is that to have to pay to go to Switzerland is a violation of equality.

The third is a constitutional argument. It is said that it is constitutionally improper for the Director of Public Prosecutions to have effectively decriminalised assisted suicide for people who travel to Switzerland. But the point I am trying to make is that under the Bill, anyone helping their relative to travel to Switzerland, or any other country, would still be committing an offence under section 2 of the Suicide Act.

Research from My Death, My Decision, a campaign group pushing for a wider Bill than the current one—it supports the Bill but clearly wants it to go further—has found that 50% of cases going to Dignitas would not be eligible under the Bill. It helps to make my point, which is that I am afraid that if the Bill were passed we would still have stories like the very moving testimony read out by the hon. Member for Spen Valley. In fact, as my hon. Friend the Member for Reigate said, there is a significant likelihood that there would be more prosecutions. If the Bill were enacted, the conclusion of the Crown Prosecution Service and the police might well be that, given the existence of an assisted dying regime within the UK, assisting one’s relative to go to Switzerland should be subject to a greater likelihood of prosecution. That is a legitimate concern.