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

Lewis Atkinson Excerpts

Committee stage
Tuesday 28th January 2025 Public Bill Committees

[Naz Shah]

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 (Sunderland Central) (Lab)]

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]

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 (Richmond Park) (LD)]

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.

--- Later in debate ---

[Danny Kruger]

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]

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]

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]

Sorry—I meant the provision of information for someone.

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

[Lewis Atkinson]

Q 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]

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]

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]

indicated assent.

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

[Dr Opher]

Q 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 (First sitting)

Lewis Atkinson Excerpts

Committee stage
Tuesday 21st January 2025 Public Bill Committees

[Danny Kruger]

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 (Sunderland Central) (Lab)]

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.

--- Later in debate ---

[Lewis Atkinson]

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.

[The Chair]

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

Lewis Atkinson Excerpts

2nd reading
Friday 29th November 2024 Commons Chamber

[Danny Kruger]

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 (Sunderland Central) (Lab)]

Will the hon. Member give way?

[Danny Kruger]

I will give way to the other hon. Gentleman.

--- Later in debate ---

[Danny Kruger]

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]

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?

--- Later in debate ---

[Rachael Maskell]

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]

Will my hon. Friend give way?

[Rachael Maskell]

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.