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.