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

Sean Woodcock Excerpts

Committee stage
Tuesday 28th January 2025 Public Bill Committees

[Jack Abbott]

Q This might sound like playing devil’s advocate, and I fully appreciate that you do not want to reduce this to a tick-box exercise, as you described it. Some might argue that the risk of what you describe is that it creates a lottery, because you would be relying on doctors to use their personal judgment as to when to have that conversation. For example, if a patient and doctor do not have a particularly close or long-standing relationship, the doctor may not know what the signs are, so the patient, who may need to have that conversation, may never have it. The risk is that you would be reliant on good relationships forming over time and doctors using their intuition, so that some patients will have the conversations they need but others will not.

Dr Green: Obviously, it would be great if we worked in a system where doctors had all the time they needed to deal with their patients. I believe that the Bill mentions a duty to provide information from the chief medical officer, and having read the Bill, to me it seems very much like this might be in the form of a website or leaflet. We believe that it is important that patients should be able to access personalised information, and we would like to see an official information service that patients could go to, either as a self-referral or as a recommendation from their GPs or other doctors. That would give them information not just about assisted dying, but about all the other things that bother people at this stage of their life, and it would mention social services support and palliative care. It could be like a navigation service as much as an information service. That might address some of your concerns.

[Sean Woodcock (Banbury) (Lab)]

Q The issue of coercion came up with our previous witnesses, and they were talking about GPs, doctors and nurses being able to spot it because of their level of training, experience and so on. How frequently does coercion, or lesser versions of it, such as familial pressure and societal pressure, come up in the day-to-day life of a medical practitioner? Is it like the asbestos awareness training that I had in a previous job—something I had to have because I might very rarely bump into asbestos—or is it a tick-box exercise?

Dr Green: You are right: all medical staff have safeguarding training, and of course patients make important decisions often with the influence and help of their family members. Usually this influence is helpful, and it almost always comes from a position of love. The point at which such influence becomes coercion is difficult to find out, but my experience is that it is rare. I would recommend that you look at what has happened in other parts of the world that have more experience with this, because they have it as part of their training modules. Certainly, we would expect capacity and coercion training to be part of the specialised training that doctors who opt in would receive. I anticipate that the general safeguarding training should be sufficient for other doctors, who would obviously only be involved at that very early stage.

[Kit Malthouse (North West Hampshire) (Con)]

Q I have been searching for parallels in current practice, and one that seemed close to me was if I wanted to donate an organ—say, a kidney—to a relative. As I understand it, a doctor can raise that possibility, even if I have not thought of it at the front end of that family decision, and coercion and capacity are then assessed later via a trained individual. Do you think it would be possible to translate both of those into this situation?

As I understand it, the General Medical Council already has guidance on dealing with assisted dying if it is raised by a patient, and how doctors should handle that. How easy would it be to translate that guidance—the process struck me as something that does not hinder but also does not enable—into something more informative?

Mark Swindells: It is important to note that our guidance on assisted dying is framed in the current law, so it guides doctors to explain that it is not lawful for them to assist their patient to die. It talks about the importance of explaining other available treatment options, including palliative care; making sure that the patient’s needs are met; and dealing with any other safeguarding matters. Oure guidance does follow the law, so if the law were to change, we would obviously attend to that. It is not framed quite as you are suggesting, so I do not think that would lift and shift into what the guidance would need to be for doctors if this were to pass.

Dr Green: I do not have any experience with what you are describing, but it would certainly make sense to look at best practice in other areas.

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

Sean Woodcock Excerpts

Committee stage
Tuesday 28th January 2025 Public Bill Committees

[Naz Shah]

Q Dr Ahmedzai, in the evidence you submitted, you said:

“I have studied the reports from, and spoken with medical and nursing clinicians from US and Australian jurisdictions and am satisfied that external coercion has never been reported or led to a prosecution.”

The state of Oregon carried out a survey of people who died under its assisted dying scheme in 2023. Its report stated that 43% of those who chose to die said they did so because they felt they were, and I quote directly from the term used in the survey, a

“Burden on family, friends/caregivers”.

Is that something you are prepared to see happen in the UK?

Dr Ahmedzai: It goes absolutely to the core of being British—we are always saying sorry, aren’t we? We apologise for everything. In everything we do, or everything we might do, we think we might be treading on toes and are always worried about being an imposition. All my professional life, I have come across patients and families in which there clearly is that feeling going on, usually with an older person or even a younger person who is drawing a lot on the emotional and physical resources of the family. It is natural that we feel a burden; it is impossible to take that out of human nature.

The issue is, does feeling that one is, or might become, a burden something that could influence a decision as major as looking for assisted dying? In that respect, I look to all those jurisdictions that have been offering assisted dying in different ways, and I have never seen a single case ever taken to the police or prosecuted. Evidence I have heard from other jurisdictions shows that, yes, it is possible—we all go through life feeling that we are a burden on someone—but it does not influence people in this particular decision. If anything, I am told that, in other jurisdictions, families are saying, “No, don’t do it.” They are exerting negative coercion—“don’t do it” coercion—but people are saying, “No. It’s my life. I’ve made my mind up.” They have mental capacity, and we respect that.

[Sean Woodcock (Banbury) (Lab)]

Q Coercion is one of the main issues that people who are concerned about the Bill raise in opposition to it. That would include myself. We had many distinguished witnesses this morning, and the view was that coercion is “rare” in healthcare generally. It was almost given across that we did not need to worry about it, because staff are so well trained in safeguarding and so on, and they have such a level of experience. What are the views of the panel on that? Is coercion something that we should really not be so concerned about?

Dr Clarke: Based on my clinical experience, I would push back on that in the strongest terms. I am the kind of doctor who believes there is nothing to be gained from sugar coating reality. We have to be absolutely honest with patients and the public about shortcomings, failings and areas where my profession and the rest of the NHS are getting things wrong.

It is my clinical experience that not only are the majority of doctors not necessarily trained in spotting coercion explicitly, but they are often not trained explicitly in having so-called advance care planning conversations with patients around the topic of death and dying, and how a patient would like the end of their life to proceed. It is almost impossible for me to overstate how much avoidable suffering occurs right now in the NHS not because of a lack of resources for palliative care—although that is an enormous problem—but because of a lack of confidence, skill and expertise among the medical profession writ large with these very difficult conversations.

We are all familiar with the idea of death and dying being a taboo in society. People are scared of it, and they hesitate to bring it up with their friends and family. In my experience, many medical students and doctors also suffer from that anxiety. They are scared, and they find it a taboo subject. What that means is that sometimes coercion occurs because the doctor—the consultant responsible for this person’s care—will not even bring up the fact that they think the patient is dying, because it is an uncomfortable conversation. Conversely, I have worked with senior hospital consultants in the NHS who have deliberately prevented our team from accessing their patients, because they believe that the hospital palliative care team wants to kill the patients, and that if I go and see the patient, I will give them a lethal dose of drugs.

These are the kinds of extraordinary misunderstandings and failures to prioritise patient autonomy that are happening now. That is even before we get started on conversations around whether someone would like to consider assisted dying, so it is a huge problem.

[Dr Marie Tidball (Penistone and Stocksbridge) (Lab)]

Q My question is for Dr Ahmedzai. The Select Committee inquiry into assisted dying received evidence that there were not any indications of palliative or end-of-life care deteriorating in quality or provision following the introduction of assisted dying. Indeed, the introduction of it has been linked with an improvement in palliative care in several jurisdictions. I have two questions, if I may. What more could the Bill do to strengthen the available choice at the end of life and the regulation of these choices as set out in the codes of practice? If you could answer that one first, I will come back to my second question.

Dr Ahmedzai: I have visited many of the jurisdictions around the world—such as Oregon, where I met the original judge who brought in the law, as well as the doctors, nurses and patients involved—and it was clear to me that if patients had not accessed palliative care, they were pointed towards it. Obviously, you cannot force anybody to go and have palliative care, but they were certainly informed about it.

In the Netherlands, I commend a system for doctors called SCEN—support and consultation on euthanasia in the Netherlands. These are trained doctors working for the equivalent of the BMA, I believe, who, as Dr Clarke has referred to, are going and supporting doctors who are not familiar with things. They often come from a background of palliative care and pain medicine, so they are making options available that other doctors in the process, for instance, have not brought up. In Australia, there is clear evidence that palliative care is becoming more available.

The European Association for Palliative Care produced a report more than 10 years ago in which it examined all the countries in Europe at the time, and it found there was evidence that palliative care was improving in scope and availability alongside the forms of assisted dying that were happening there. I am reassured that bringing in some form of assisted dying, particularly the form proposed here, would be a boost to palliative care.

One of the things I would like to see is that anybody who is involved in the process is constantly asking the patient, “What about palliative care? Have you actually accessed it?” Right now, if they have not raised their hand and asked for assisted dying, no one has that conversation with them. They are in a vacuum and a bubble, and not receiving palliative care, whereas this provision would possibly make it more available.

--- Later in debate ---

[Naz Shah]

Q But there are cases where insurance companies would stop paying for the treatment of the individual. Am I right?

Dr Spielvogel: No, I actually do not think that you are right. When we are talking about lifesaving interventions such as chemotherapy or dialysis, that is not correct. They are bound by law to cover all things that are medically necessary. They do not say, “You have gotten six months of chemo. We are not paying for any more.” That is not how it works.

[Sean Woodcock]

Q It seems clear from what you are saying that in your view, coercion is rare, or at least it is rare in comparison to familial pressure not to go ahead with assisted dying. It does sound, though, like you are saying that it is more common for people to say that they feel as though they are a burden towards the end. I think Dr Kaan said it was common, or certainly less rare than coercion to go ahead with assisted dying.

We heard from experts earlier about the paucity and lack of provision of care across the country. Certain people can get access to very good care, but too many people struggle to, particularly people of certain ethnic backgrounds, people on low income, and so on. Please correct me if I have misinterpreted your views, but from what you have said so far, it sounds as if you think that exercising the right to assisted dying because there is a paucity of appropriate care in your locality, or because you cannot afford it, is a perfectly legitimate exercise of autonomy, based on the society around you. Would that be a fair assumption of your views?

Dr Kaan: I think that is not an entirely fair representation of what I am saying. Yes, we do need respect for people’s autonomy and the reasons they may come to this choice, but I also think that from what I have heard this morning, it sounds like there is a conception that people choose assisted dying and then they do it. What I see, by and large, is that people want to have this as an option. It is an option among the other options of hospice palliative care or palliative treatments. The availability of this as an option often brings people tremendous relief from their suffering—just from the anxiety over how they might die, or what suffering might be in store.

I had a case of a woman with ALS, or amyotrophic lateral sclerosis. She was very afraid of how she might die with that condition, and she felt like she might suffocate to death. She was so focused on having the option of aid in dying because she was terrified of what might be in store for her. We were able to incorporate her into a hospice that offered comprehensive end-of-life care, including the option of aid in dying. We got her through the process, we had the medications available and she told me how much relief she felt from having it as an option, but ultimately she decided not to use it. She decided that she was getting really good care from her palliative care and hospice teams, and that her symptoms were well controlled. Although she was extremely grateful that she knew the medications were available should she decide to use them, she did not end up needing to use them or wanting to use them.

That is the reality of what is happening in a lot of cases where this is an option among other options. The availability of this option is, in and of itself, a palliative care treatment for many people. On whether or not wanting to avoid being “a burden” to a family member or to a caregiving team is a valid reason to pursue this, yes, I think that is a valid reason among many for people who have a value system that highly orders that.

Dr Spielvogel: I just wanted to add something, if I may. I have heard this argument—or rather, this concern—a few different times, and it strikes me as what is called a false dilemma logical fallacy: that there is either/or, when in reality there are many alternatives that people can choose from. Saying “If we don’t have all of these types of care, we shouldn’t offer this option” is like a hospital that does not have sufficient amounts of IV pain medications saying to a labouring woman, “Well, we don’t have enough IV pain medications, so we are not going to offer you a labour epidural, because that is a false choice.” That does not actually make sense.

Look at it from a patient’s perspective. Think about a patient who is dying from terminal cancer, is in lots and lots of pain and does not have any good options for their pain control. Imagine saying to that person, “We don’t have all of this care or this option over here available to you, so we are not going to allow you to have an assisted death”, even if they are telling you, “This is what I want. Why won’t you give this to me?”. It does not make sense to remove this as an option just because all of the options might not be available to everyone all of the time. It is a bit cruel when you think about it from a patient’s perspective.

[The Chair]

We have two minutes left before the evidence session finishes. Dr Simon Opher, please ask a very quick question and perhaps we could have a short response. I do not want to interrupt our witnesses at the end.

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

Sean Woodcock Excerpts

Committee stage
Tuesday 21st January 2025 Public Bill Committees

[Naz Shah (Bradford West) (Lab)]

Just following on from the speech of the right hon. Member for North West Hampshire, I would not read the situation as a misunderstanding by the hon. Member for East Wiltshire. I read the motion to sit in private not as an informal discussion, but as a very formal discussion. I am grateful to the lead Member for the Bill, my hon. Friend the Member for Spen Valley, who before this meeting explained to me what has now been explained here—about the issue of people’s availability, privacy and so on. But I do not suspect that we will be going into those details. If people are not available, we do not have to discuss why they are not. We do not have to discuss their personal lives. I am not sure that that is a good enough reason not to have a discussion in public. I trust colleagues across the Committee to be collegiate enough and big enough to refer to witnesses with respect. I think that is a given, considering the way in which we have conducted the Bill so far. I therefore do not support the motion to sit private.

[Sean Woodcock (Banbury) (Lab)]

rose—

[The Chair]

Mr Woodcock, of course I will call you if you wish to be called. I am rather keen to move forward if we can. Do you wish to make a brief intervention?

[Sean Woodcock]

I do wish to make a brief contribution. I am broadly sympathetic to the fact that there is considerable public interest in the Bill, so we would all broadly welcome as much public scrutiny as possible of all its aspects. However, I think the hon. Member for East Wiltshire made a meal of his argument, talking about the merits or otherwise of the various witnesses and casting aspersions, which I note he has withdrawn, on my hon. Friend the Member for Spen Valley, who is the promoter of this legislation. I will vote to sit in private, despite the fact that I am sympathetic to the idea that as much of the Committee as possible should be in public.

Question put and agreed to.