Assisted dying: Who’s eligible under the proposed bill?

BBC Sounds. Music, radio, podcasts. Welcome to the Inside Health Podcast with me, James Gallagher. Episodes are released weekly wherever you get your podcasts, but if you live in the UK, you can listen to the latest episodes a whole week earlier than anywhere else, first on BBC Sounds. Hello there.

Later on Inside Health, we'll have exclusive research on the differences between men and women's immune systems and why that affects the risk of infection and even autoimmune disease. But first, we're going to tackle a difficult topic, giving people...

drugs to end their life, what's known as assisted dying. The Terminally Ill Adults End of Life Bill is working its way through Parliament. If it became law in England and Wales, it would be one of those moments in history that profoundly changes society. There are similar discussions taking place in Scotland, the Isle of Man and Jersey too.

Now, I want to be clear about what we're going to do on Inside Health. We're not going to debate the rights or wrongs of assisted dying or go through the politics of the bill. Instead... Over the next few episodes, we're going to explore some of the issues that will come up if assisted dying goes ahead.

And we're going to start with eligibility and who could get an assisted death under the proposed rules. I've got a group of experts with me and all of them have been thinking deeply about the issues around assisted dying. And can I get you all to introduce yourselves?

My name's Catherine Sleeman. I'm Professor of Palliative Care at King's Quality London. I have no in-principle objection to assisted dying, but I have concerns about the practical implementation, in particular the risks to vulnerable people.

My name is David Nicol. I'm a consultant neurologist. I was actually opposed to assisted dying, but it took the death of my friend Fabi through euthanasia to teach me that sometimes modern medicine doesn't have it all. And we should think about assisted dying, respecting the dignity of those who are terminally ill who want to. make one final decision on their terms.

Hi, I'm Erica Borgstrom. I'm a professor of medical anthropology based at The Open University. When it comes to assisted dying, I don't necessarily have a position that says it's wrong or right in and of itself, but I think we need to have a lot more conversations about what it means to us as a society. And I'm Mark Taubert. I'm an adult medicine consultant in the NHS in Cardiff. When it comes to assisted dying, I will call myself a skeptic.

I'm very interested in the safeguards. Thank you all for agreeing to take part in this programme. Mark, can I start with a question for you? It's quite clear in the bill that the goal here is that an assisted death will be limited to people who have less than six months to live. Who does that rule in? Who does that rule out, Mark? It's a good question. When you're with a patient in a clinic room or in a hospital

Looking forward is always a big challenge. It becomes especially difficult the further away from the date of death you are in some ways. So a few months away, it's very difficult to predict. If your days away, it's not so difficult to predict. And then it can also be conditions specific as well. So it may be a little bit easier for terminal cancer conditions to make a prediction. It is a lot harder for some of my other patients. I see young patients with cystic fibrosis. I see people...

with chronic lung conditions. I see people with alcohol-related conditions and then that becomes a lot more difficult. Catherine, this does immediately rule out some people though, doesn't it? If you're living with chronic pain... and you feel like life isn't tolerable because of that, but that's not a life-limiting condition, this legislation does not apply to you.

Right, so this legislation is designed for people who do have some kind of terminal illness. Mark is absolutely right, though, that this six-month line in the sand is very difficult to predict with any degree of certainty. A team at UCL actually did a large research...

study where they pooled data across several studies that had looked at this question of prognostication and what they found after pooling data from literally thousands of different individual estimations of prognosis was that doctors got it right. less than half the time. So it's actually worse than toss a coin in terms of accurately judging who's going to die within six months and who isn't. David, I want to come back to this six months to live terminally ill thought.

How does that work in neurology? Because I'm just thinking of some conditions like motor neurone disease where the process where you might want to consider an assisted death might be much earlier than that. It is difficult and, you know, I'll learn my sport of the bill. At the moment, I'm disappointed because one amendment got put in for...

Mutant Neurone Disease really to say, you know, should this be at 12 months? Now that amendment's been dropped. I hope maybe that might get reintroduced in the Lords. But in other countries where assisted dying is present, usually around about 15% of patients will have. MND or other neurotic conditions and particularly with neuromuscular conditions and motor neurone disease making prediction of prognosis six months I think will be a very real challenge actually.

David, would this bill apply to somebody with something like Alzheimer's disease? Because I can imagine a scenario where early in the process you might want it, but towards the end you don't have capacity anymore. It wouldn't because I can't picture a situation where some of Alzheimer's who has capacity is terminally ill by virtue of their Alzheimer's. Erica.

How closely do you think the legislation matches with where the public is at on assisted dying? Because if I were to think of some of the people that might say, I would want an assisted death. It's not necessarily just terminally in the last six months of life. Is there a mismatch?

Yeah, so I think there's a bit of a mismatch in that on one hand, people see this legislation as reflecting sort of a general population drive towards wanting to support some sort of sense of autonomy and agency around life and death. The mismatch that we're seeing with this legislation...

though in particular, is around who could be eligible for it, how it might actually play out. And what does that actually mean in terms of what death looks like? I think there's probably an idealised sense of what this legislation could deliver that we don't really understand in terms of...

how it's actually going to play out. And the people who might be campaigning for assisted dying may not actually fall within the eligibility criteria that's currently being proposed. Can you give me some specific examples? Yeah, so there again will be examples around people who have conditions.

that the prognostication is really difficult. There's a lot of people who might also express a wish much earlier in their life that maybe when they're... older and they might have certain conditions or care needs or maybe have dementia that they would like to express that wish earlier in their life to hasten their death or have an assisted death later which would not apply in this current legislation and there's also other people who

express a desire for a much wider sense of what's acceptable as being a reason for requesting a sister. And I think the other thing that's, for me, interesting as an anthropologist looking at this is there's a lot of conversation.

In some of the political discourse around suffering and what dying looks like, but we're actually not really exploring the multiple ways in which dying does currently look like in this country and how people can be supported with different types of suffering. Catherine?

What Erica said has reminded me of some really important data around public understanding and awareness of what assisted dying actually is. So the Nuttfeld Council on Bioethics did a public opinion poll last year. They found that two in five members of the public... think assisted dying means being able to say no to potentially life-prolonging treatment.

Two in ten members of the public think assisted dying means giving dying people pain relief. So there's actually a really important gap in terms of the public's understanding about what we're actually talking about here in terms of giving people lethal drugs.

We talked about giving you drugs to end your life. With the intention of ending your life. On the other side of that data, we did some polling last year as well, where we found that one in 20 members of the public think palliative care means giving you drugs in order to kill them. you. As a palliative care doctor I found that extremely concerning and it's actually played out in my clinical practice. We also found that that

Fear that palliative care means giving you drugs in order to kill you is much higher, much more prevalent among certain groups, for example, minoritised ethnic communities. Catherine, with six months to live... Is there a medical basis for that decision? Is there an argument that you're shaking your head straight away?

There's nothing special about six months when it comes to terminal illness. So this bill could as easily say four months or it could say 15. It's been chosen as a convenient number. And the thing about that is when... Laws don't rest on firm foundations. They are more likely to slip and slide. And, you know, we're hearing from David quite good reasons why maybe it ought to slip and slide more towards 12 months. I think six months feels a bit more palatable for us than...

any prognosis, six years. But actually, if this bill is going to slip and slide, what does the public think about that is quite an important question. We've talked about how difficult it could be coming up with a prognosis of six months. But Mark, you must have patients asking you this all the time. How long do I have left to live? Yes, I do. I try not to give numbers and figures because the first number you say will stick in the person's mind.

But what I sometimes do is sort of say, look, when you've noticed a deterioration and you find a patient has deteriorated from one month to the next month, then there's sometimes months left. If someone has deteriorated, deteriorated from one week to the next week to the next week then there's sometimes just weeks left and if someone is deteriorating day by day and there's a noticeable deterioration then there's sometimes just days left but

Even that is hopelessly vague. I've had people referred to me and my practice with oncology colleagues saying, I think this person has just got days left to live. And they've... improved and I've seen them years later in my palliative care clinic and sometimes even discharged patients. Many years ago, I had a patient transfer over from England to Wales, stabilized. We gave him fluids, we gave him oxygen, we gave him good pain relief in the hospice setting, and he improved.

He had some intravenous antibiotics, was discharged and then started a lung cancer treatment and was still around 11 years later. until he died. If he would have asked me then, I don't think I would have given him longer than that weekend because he was... So sick, you're sick enough to die at that moment. And that's what can make things very, very difficult in terms of prognostication. How common are those kinds of cases?

Where you go, I think you're going to die, and then they're still around a decade later. To me, it feels like it's one of two extremes. Either someone's very bad at calling how long somebody has left, or these are incredibly rare events. There used to be rare events. They're becoming more common. And the reason they're becoming more common is because all sorts of new treatments and therapies are coming online.

Even the sort of more straightforward examples like what you often refer to as terminal cancer or stage four cancer are not that easy anymore. And people are defying our expectations. And I've had people for 10 years plus in my palliative care clinic.

they are not dying, they are just living with the chronicity of their advanced cancer diagnosis. David, is the same thing happening in neurology or is that a specific example of there have been advances in cancer medicine which are changing those predictions? That's true, but also we can also get prognosis wrong the other way. Prognosis is difficult, but equally you can see patients sometimes who you think are going to live months and it ends up weeks. So it can work both ways.

And equally speaking to colleagues where this legislation has been passed, you know, not all the patients that go on to assist... dying pathway actually use the drugs but actually having that almost in the back pocket that they had the option was an immense relief to them. Does that mean in practice then Catherine that really we're talking about this?

being people in their very last few weeks of their life when you can be certain that it definitely is in less than six months if you can't call it that far out. Well, that's the thing, and I think it's going to depend on the doctor who's making that estimation. And I think that that may be the case for some doctors who are really erring on the side of caution. I am absolutely certain this person is going to be in their last six months of life, because in actual fact...

think they're probably in their last few weeks but there may well be some doctors who are the other way and say actually I think yeah there's a chance they might die within six months so I'm going to say that they're eligible. So I think it probably does depend a lot on the doctor in front of the patient. Catherine, England and Wales legislation is looking like being terminally ill and six months. Is that the only ideological choice you can make about where you draw the line?

It's really interesting because other countries around the world have an explicit requirement around suffering. The patient needs to be suffering to have an assisted death. And actually we hear a lot about pain, we hear a lot about suffering in this debate, but actually there's no requirement within the bill currently going through Parliament that the patient needs to be suffering and certainly no requirement that they need to have pain. What do other countries choose to do then?

What are some of the other systems that are in place around the world? Because this might be new for the UK, but it's not new on a global level, is it? They're the two main choices. It's a terminal illness choice or a suffering choice. Yeah, and I think that terminal illness is like how that's defined. So it might be six months, for other places it could be like three or twelve, or it's the suffering or the unbearable suffering or thinking that life...

is a state worse than death itself. David, coming back to this thought of six months, though, I suppose if you are going to introduce some kind of assisted dying legislation, you have to draw the line in the sand somewhere. You have to make...

a decision on what the appropriate eligibility criteria, even if that's imperfect. I agree. And I think making a terminal illness is correct. I actually would be uncomfortable if it was... internal suffering because defining that becomes very very problematic uh and i think if you do that there is a risk of what happens in canada you know patients with say chronic fatigue going through med which is the canadian process

think restricting terminal illness is the correct way to do and you have to have some kind of line of the sand i suppose where i'm coming from and i would say that because i'm a neurologist i just think six months is is going to be tough

Well, there's a lot to ponder there. Let us know what you think about what you've just heard. Do email insidehealth at bbc.co.uk and we'll be continuing the conversation with our panel of experts over the next couple of weeks. Next time, we'll be tackling safeguarding. How could we be certain an assisted death is what the person wants and who starts that conversation?

Now, have you ever wondered why men and women seem to have different immune systems? The pandemic showed us the COVID virus posed a greater risk to men. Meanwhile, autoimmune conditions, when the immune system starts attacking the body, are far more common in women. So what's going on? Well, a pair of scientists at UCL are starting to piece together the answers. Let's meet them.

Hello, I'm Lizzie Rosser. I'm an Associate Professor in UCL Division of Medicine. Hello, I'm Lucy Wedderburn. I'm a Professor of Paediatric and Adolescent Rheumatology at University College London and Great Ormond Street Hospital. Well, Lizzie and Lucy, welcome to Inside Health.

Hello. Lucy, can I start with you? Let's just tackle the big question that starts all of this. Is there a difference between men and women's immune systems? Like, does that show up in clinic? So we know that there is, but for instance, in my profession...

The biggest difference perhaps is beginning with who gets diagnosed with the conditions at all. So some conditions are much more common in women than men. A few conditions that we look after in rheumatology are more common in boys and men than girls and women. And that makes it quite difficult, I think, if you're a member of the smaller group. So if you're a man with rheumatoid arthritis or a woman with the type of arthritis that's more common in men, it might not even be recognised.

So give me some examples of where you will see I'm far more likely to see a woman than a man. So rheumatoid arthritis, and in my particular field, in children with arthritis, which itself is rare, so three out of four new patients in my clinic will be girls. and also in lupus, which is a condition that can affect many parts of the body, so can come to the doctor's clinic in lots of different ways.

Things like multiple sclerosis as well, isn't it? Lots of autoimmune diseases seem to hit women harder. So it seems like nearly all of our autoimmune diseases are more common in women than men. So there must be some general... mechanisms that make that happen to the immune system. Lizzie, do we see the same pattern play out when it comes to infection? So we see a different pattern in infection.

Men are generally thought to be much more susceptible to infections than women. I think the example that everybody would have heard the most is COVID-19. We know that men had much more severe outcomes in general when they developed COVID-19 than women. And do we think that applies to all infection?

Generally, yes, not completely. So, for instance, women are much more likely to get urinary tract infections and respond more strongly to some infectious agents like flu. But men generally have more severe. Outcomes from infections, I'm thinking now of young boys, you know, ear infections, sinus infections when they're young. But so generally, yes, but not as is the case with autoimmune conditions, not everyone. Can I ask the most controversial question of all time? Is Man Flu Real?

I think that men and women may have a different perception of their symptoms. Maybe we could say that men are finding it harder to fight it off. But I wouldn't want to get into that question in my household. So I'm not sure.

Lucy, how close have we come to understanding the biology that underpins those differences? That kind of men are more susceptible to some infections, women seem to be more susceptible to autoimmune diseases. It kind of feels like the... immune system is running hotter in women.

Yes, that's exactly it. I think we're far from really understanding this. It's only in recent years that people have even tried to feed in sex into the analysis of the immune system and look at it. which parts of the immune system are different. OK, but both of you have been working on this study that's been...

attempting to unpick what the difference is in the immune system and how it could arise. So Lizzie, just explain to me this group of people used in this study. So we used a very large cohort of people. people who were pre-puberty, post-puberty and then also in the case of women post-menopausal. And what we did with that study is we were able to see how different immune populations changed over age and how that was different based on whether or not you were a man or woman.

And what we found is that a certain type of B cell, and a B cell is an immune cell that produces antibodies that's important for clearing infections, is much higher in women than men. Take me on that journey about the special B-cell throughout life. When do the differences emerge, Lucy, and what are they?

Yes, it's really interesting. We were able to look from a very young age, so in young children, right through puberty, adult life, and even post-menopausally in women after the menopause. And what we saw was that in young children, there was no difference between this special B cell between boys. and girls. And then as puberty was coming, we saw a rise in the typical number in girls and young women. So by adult life, young women had more of these B cells than young men.

and in older life we saw another change, which is after the menopause, the number in older women fell again. except for women who were taking HRT. So those are people taking, in a way, the oestrogen to replace what they're no longer making naturally. They still had a high level of these special B cells. So, Lucy, what does that tell us then?

pattern that it goes up at puberty and stays high basically until menopause happens do we think that is the reason why you get this difference in risk of infection and autoimmune disease. So it might be tempting to be very simplistic and think that the hormones that we make during puberty and then through reproductive life could be the reason.

The thing is, we didn't believe that was the only reason because of our other knowledge. So, for example, arthritis in young children is still more common in girls and boys, and that's before their puberty. So there must be something else as well as making oestrogen. And that's what we've been able to do in this study is sort of tease out.

some differences between whether it's the hormones in our body or actually the genetic background, what we call the chromosomes that make sex. So XX chromosome in women or XY chromosome in men. And Lizzie, to do that disentangling of the role of chromosomes and hormones, the study also examined blood samples from trans men and women, and that shows you something different, doesn't it?

So because of the transgender cohort that were people who were willing to give blood to our study, we were able to look at trans women who were assigned male at birth, so XY, and taking oestrogen. So that means that we can look at the kind of... impact of estrogen.

and chromosomes separately. And we also had other people taking drugs that suppress the production of oestrogen when they're assigned female at birth, so our trans male cohort. So this meant that we could see how suppressing oestrogen would affect your immune system.

this mixture of different people then in the study. So you've got some people with XX chromosomes since birth, some with their bodies producing oestrogen, some taking drugs to block the oestrogen. You have people with XY chromosomes whose bodies aren't naturally produced. high levels of estrogen and some who are taking drugs to

add estrogen into the body. When you build that mix of people, what does it tell us about the differences in the immune system? So the results are that estrogen seems to only influence this population of special B cells in individuals with... So what we know that's really important is this interaction between oestrogen and having two X chromosomes. And that's why it's so important that we have the people before puberty and also post-menopausal women.

showed us for the first time the importance of sex hormones and sex chromosomes working together to influence. You need both. Yes, you need both, exactly. Both X chromosomes and estrogen. No other combination gets you to the same level. And so when you detect this difference in this B cell in the body over time, does that give you a plausible...

explanation for why you could have a high risk of autoimmune disease but better defences against infection? So B cells are critical in fighting off infections but we also know that B cells are central to causing inflammation in auto... immune conditions like arthritis so it may also help us understand why women are more at risk of developing these diseases that are b-cell driven such as autoimmune conditions so it's a viable culprit for this difference between men and women's

immune system a viable part of the culprit so yes it gives us some evidence that they may be playing a part and this may be contributing to some of the differences that we see

Lucy, the whole time we've been chatting, one of the things I've been wondering about is just why is there this difference between men and women's immune systems? It must have evolved to be like this. Why? It's a really interesting question and we think about it a lot as well. The simple answer is we don't know, but it's possible to speculate that under the pressure of evolution, where infections would come and potentially wipe out a big number of the community...

Those who were able to fight off the infection, survive and therefore care for the children were absolutely critical. And somehow the pressure of evolution led to that response being more common in women than men. I should say it's not a completely... binary thing. It's not that all men respond one way or not. They're very much overlapping in some of the measures we have.

So, Lucy, if we know that there is this interaction between hormones and sex chromosomes and that's helping to dictate how our immune system functions throughout life, could have roles in autoimmune disease and how susceptible we are to viruses. versus... Can we harness that? Is it going to make a difference? It will make difference in the future to patients, and in some fields it's already the case. So, for example, I'm not a heart doctor, but in cardiovascular medicine, the way women came...

to casualty with their heart attacks. It used to be called atypical. It was called atypical because they're different to men. Now that's well recognised and being male or female is sort of... woven into that specialty. So that's clearly always been the case for us in rheumatology because we know some conditions are more common in men or women. But what it might open the door to are new immune treatments that might work differently in men and women.

So you talked about vaccines or something more complicated? I'm actually talking about immune treatments that we already have in the clinic, but most of the data that I can use to advise a patient whether this drug will work... doesn't have any information about whether it's going to work better or worse if you're male or female. So at the moment, I can't weave that into my advice. And whether you're male or female and whether you're menopausal or not.

to go on HRT, would that affect whether you're... you know, drug for your arthritis is going to work. And almost any part of the immune system you look at, there are differences if you systematically compare men and women and whether they're taking hormones. So it's actually going to be a big picture.

is going to be part of that picture, whichever aspect, whether we're talking about vaccines or infections or autoimmune diseases. So we really need this kind of data. And this has really shone the light on how important it is just to record mail. female in all trials that we do which has not been the case in the past I suppose Lizzie there's been so much chat about personalised medicine and one of the biggest things you can personalise it to is whether you're a man or a woman

Yeah, so another great example is that men and women have very different metabolisms. So how they metabolise drugs may be different. So if we move forward into the era of personalised medicine by harnessing...

Drug concentrations or different kind of drugs based on whether you're a woman or a man may improve outcomes and how diseases may present and also what different risks you may have for developing different kinds of diseases. Lizzie, does this answer the question where we almost... started on the difference between men and women's immune systems like is it part of the answer is it the answer how much of the picture have you managed to paint now

Well, one of the reasons I love the immune system so much is because it's really complicated. And there's so many different parts to it. And I think this shines alike just on one aspect. I think the more we include men and women in studies, the more we include trans men and women in studies, the more we include... people across the age range, the more we can find out about how the immune system works. So I think it's the beginning of something really exciting.

Well, Lizzie and Lucy, thank you so much for coming in. Next time, we're going to continue our exploration of the implications of the assisted dying bill with our expert panel. And in the meantime, you can compare how other countries view different forms of assisted dying. Go to bbc.co.uk slash inside health and follow the links to The Open University.

You've been listening to Inside Health with me, James Gallagher. The producers were Hannah Robbins and Tom Bonnet. The show was a BBC Wales and West production for Radio 4. See you next time.