Episode Transcript
[00:00:10] Joe: Hello everybody. Welcome to this introduction to season three of the Great Ormond Street Paediatric Bioethics podcast. My name is Joe Brierley. I'm director of the Paediatric Bioethics Centre at Great Ormond Street Hospital. I'm the host of these pods. With this third season, we've attempted to focus a bit more on how clinical ethics support to children’s medical teams, children and their parents has developed over time and focused a bit more on some of the legal issues and maybe practical issues in a more global sphere that people are thinking about in developing that support as paediatric medicine gets ever more complex. We also have some specific episodes focused at very hot, ethical topics such as organ donation and transplant in small infants, and I really hope you enjoy the season and please feedback. They're available wherever you get your podcast from, and we'll be releasing them every two weeks. Thanks everybody.
Hello everybody. Welcome to the latest edition of the Great Ormond Street Paediatric Bioethics Podcast. I'm delighted to introduce our guest this week who is Ellie Updale, who's been a bastion of our paediatric bioethics setup at Great Ormond Street for well, decades, and I'm delighted to say she's a friend and colleague.
Ellie, welcome to the podcast.
[00:01:26] Ellie: Thank you.
[00:01:27] Joe: So, Ellie, you've been on the clinical ethics committee for a long time. I'm really happy you can join us to maybe give a longer-term perspective on ethics and your role in the group. That'd be really helpful. But could you start off by telling us about your background and how you became interested in medical ethics?
[00:01:43] Ellie: Of course, like so many lay people who get involved in these things, it all happened completely by accident. I'd studied history at university and there was some medical history in that, and particularly in the PhD I did, there was quite a lot of medical history, but it was 17th century medical history, so I knew about the discussions about doing blood transfusions between sheep and humans, but not anything
relevant to GOS exactly. Anyway I did that then for 15 years. I was a producer on BBC television and radio current affairs programs. Then I had three children in just over three years and I had to make some changes to my lifestyle . And the main thing actually that happened then was I'd had my children so close together that I actually had the same midwife all three times.
And she asked me if I would join the, what they called the maternity services liaison committee there. And it wasn't ethics. Funnily enough, it was there that I had my first experience of medical ethics because it turned out that while I was having these babies, this would be the middle of the eighties, into the nineties, they'd been testing us all for HIV.
I think in those days they didn't even call it HIV, I think they still called it aids without telling us, without asking for any consent. They decided that they would anonymise it. And then when I was on this committee, they just got the results back and they discovered there was a far higher prevalence of HIV than they'd expected.
And they couldn't tell anybody they got HIV because it was all anonymous. But they realised they'd been putting their staff at risk, but also what could they do? Because they couldn't tell us, in retrospect, that we'd been tested against our will. We’re not being even asked what we thought about it or told anything about it.
So that was my first little introduction to the world of consent. I have to tell you that their decision in the end was to do nothing about it whatsoever, except ask the midwives to wear gloves. So…
[00:03:52] Joe: It's astonishing looking back, isn't it?
[00:03:54] Ellie: Yes. Yeah. Yeah. Things have changed a bit.
[00:03:57] Joe: Just a reassured podcast listeners, no sheep were hurt with transfusions during this podcast being made.
[00:04:02] Ellie: Not none at all. No sheep.
[00:04:03] Joe: But it's fascinating how for many people, there's a personal reason they get involved with medical ethics, which is either a treatment issue or as you, an unconsented test on something.
[00:04:14] Ellie: Yeah. Although that wasn't my driving passion, you know, or anything.
[00:04:16] Joe: Right. Okay.
Let's go to that. What was?
[00:04:19] Ellie: It was accident. It turned out that one of the mothers at the playgroup my three children went to, was a then young doctor at Great Ormond Street, and she was involved in the dawn of clinical ethics at Great Ormond Street, when it was called the Clinical Ethics Forum. And they were looking into parenteral nutrition, which of course I didn't know what that was. And so they needed a lay person on the committee and she asked me if I'd come along and do it. And there, I met the man who was setting up the clinical ethics forum and he asked me to join it.
And I think that was 1996. So next year it'll be 30 years.
But I have had a gap in the middle of that, having moved to Scotland.
[00:05:03] Joe: Yeah, my next question was really going onto that. Apart from that short gap, which was off to Scotland before we really got video conferences going for our ethics meetings, which has been a much better system than I thought it might be as the old Luddite in the room.
So you've been a member of the GOS ethics setup for what, three decades?
What are the biggest changes you've seen in how Ethics works?
[00:05:27] Ellie: Probably the biggest thing is the way it's regarded beyond the forum or the committee? I think at the beginning there were a lot of people within the hospital who just didn't see the point of ethics at all, or who thought that ethics was about ‘is it all right to steal each other's patients’ or, you know, ‘can I give a job to somebody just because they're a good rugby player’ and we need them in the rugby team? And things have moved tremendously since then. Obviously in the way we conduct ourselves, bringing parents into the meetings, has been a good, a difficult, but I think wholly good change.
And it's, I think, brought home to us very much that, in a way the staff have got all sorts of support and a lot of them these days have at least touched on ethical considerations in their training.
[00:06:19] Joe: Yeah.
[00:06:19] Ellie: But these poor parents who are living through what is often the very, very worst thing they've ever experienced, often in a setting;
I know I'd never been in a hospital until I had children. And I'm quite sure a lot of the parents we deal with, they're unfamiliar with the setting. They're terrified. And supporting them is, I think, almost more important than supporting the staff. And also making clear to people that we are not making decisions.
We're trying to give people the tools with which they can make a decision. And that there isn't necessarily a correct answer. There may be a series of regrettable decisions to choose from. Or two equally good decisions. And nobody knows which is the better and nobody will ever know, because you can only do one.
[00:07:09] Joe: Yeah.
You only have one road you walk in the end. Yeah. Very good. I guess, just reflecting back on what you said. After some of the challenges when we started having parents come along one of the things was do we revert to not having parents? And what I thought was wonderful was our entire committee were up in arms.
You know, once you've experienced parents being part and children, we bring children into the ethics meetings, of course, able to come. It's almost like, no you couldn't not have them. So even though there were some challenges, it was an absolutely convincing, this is how we work now.
This is how we do it. There's no suggestion we might go back.
[00:07:42] Ellie: I think it does bring risks as well though, Joe. I am quite worried about getting into a situation where the most articulate, loudest, parents might get what they want.
Because having got to know them, you can't help but like them and, a child shouldn't be penalised because they have unengaged or, inarticulate parents.
[00:08:04] Joe: Understood. But that's surely more on us to make sure we provide that service, if you like, to people who might in terms of language or ability to understand some of the concepts that's on us.
I think that we have to make sure the service is as good for everybody if we can, but you are right. There is a risk that someone articulate and it's the same in healthcare, right? Someone who is similar to healthcare practitioner. We know there's lots of issues with diversity and social deprivation, and I think in ethics we're starting to think about how that affects us more directly.
So I think there are changes coming, but yeah, you are right to raise it. That it's an ongoing issue and we have to be mindful of it for sure.
[00:08:47] Ellie: Yeah. I've been very interested as an outsider looking at you all working, how easy it is for people to make assumptions about families.
And I remember once in a very early meeting, so this will be on the way to 30 years ago, hearing a mother described as though she's not very engaged. I asked a few questions and it became clear. This lady, she not only lived in Essex, she had two jobs. She had three other children. There's probably nowhere she would rather have been at the bedside of the one sick child, but she had been branded, as not very engaged.
You know, but her husband worked in Central London and was able to get to the hospital more easily. I also, you know this already, but I'm going to say it in case anyone listening to the podcast happens to agree with me. It really distresses me the way medical professionals talking about parents, when the parents aren't in the room, tend to refer to them as mum and dad. I think it's a sign of a, it's patronising and it shows a slight lack of respect. It's not intentional, of course, but they're not your mum and dad and the only people entitled to call them mum and dad are their children. I think they're Mrs. this and this or that, or if they're anonymised, his mother, her mother or whatever.
[00:10:20] Joe: Yeah your point's really well made and I think things have improved. We've both done this for decades and I think, how we understand about the child in the setting of the family and the other burdens, and the other good things about the family's strengths and weaknesses, bringing those to the bedside and understanding them, I think we're better.
It's not perfect and it's harder for some families than for others. But actually maybe starting to ask them about what their lives are like. And as your point's really good, there are still people who struggle to get to the hospital because life is hard, right?
[00:10:52] Ellie: Yeah.
[00:10:52] Joe: Life is hard. And that's the people who can tell us that we have others who don't feel able to tell us stuff.
So, there's a lot of work still to be done, but the direction of travel is good.
[00:11:03] Ellie: But I do wish we could follow things up longer term though. For example, you make a big decision about somebody and maybe it's a good decision and maybe they survive. We've got cases we could go back to, and go to people who will now be young adults or even, parents themselves, and ask them about what they thought of what was done to them. Or what their experience was. I remember being at a conference with you and there were people who'd been in intensive care. It was so interesting to hear what their memories of it were because in almost every case, what they could remember was the noise, and never mind the pain. Never mind the medicine. Never mind everything else. It's just these alarms going off all the time.
[00:11:46] Joe: Yeah. That was a very striking case. We even published that.
[00:11:49] Ellie: It would only take five minutes to redesign things so that these things, because most of the time what's so distressing is nobody takes a blind bit of notice.
Of the alarms because some are just saying, oh, the paper's running out on this machine. Or also, you know, it's not, the child isn't about to die.
[00:12:06] Joe: Our nurses do a fantastic job reassuring parents, but you know, there's even alarm fatigue for nurses on the ICU.
There's so many alarms. Which one's important? There's a lot of work being done trying to work out.
[00:12:17] Ellie: I was in hospital, it happens the other week for adults, and there are alarms going off all over the place, and you start worrying about the other patients.
[00:12:24] Joe: Yes, of course. Which ones are important?
Which ones aren't? Yes. I presume the people ignoring them know that they should be ignoring them. It's a fascinating area of medicine.
[00:12:33] Ellie: But that's ethical too. We tend to think that ethics is about, oh, should we do the heart transplant? You know?
Or is it all right to withdraw treatment? It is just as important. Is it right to have people in an airless, ugly place with a load of noise and overworked, exhausted carers?
[00:12:54] Joe: Yep.
[00:12:55] Ellie: That's ethics just as much as anything else.
[00:12:57] Joe: Exactly so. I think Janet Radcliffe Richards, who was on our committee for many years, a philosopher from Oxford, used to say, it's the day to day stuff you should worry about. Not all the rare, high profile, ethical controversies, but what you're doing on a daily basis. And, you know, as you say the workload of some of the teams in the hospital is phenomenal. And that's the same in all hospitals. Medicine is more complex. There are more demands, there are more successful treatments, there are more challenging situations, which is one of the richest things we find in ethics.
The conversations are very rewarding. But maybe moving on, from individual ethics and kind of how we work in one hospital. You've had a number of roles on I might say national committees or committees looking at broader things. So we were both together on the UK donation ethics committee when it existed, and you involved in other committees.
How do you take yourself into those roles? I always think you are a public representative if you like, how do you represent people?
[00:13:51] Ellie: You can't, can you? You can't represent everybody, I feel that the role of a lay person is it, there, there are things you can do that nobody else can do.
The most important, I think, is you are very often the only person in the room who can ask, what exactly is an AW34R, you know, that somebody's been banging on about for ages and all the professionals in the room are terrified to ask because they think it makes them look stupid.
And you can cut through that and actually get people talking normal English about stuff, which makes them focus more on what they're actually trying to say and not going into just a welter of jargon. And the other thing you can do is watch for the careerist, greasy pole climber. And there's always in every meeting, in every subject, you know, a lot of the work I do is absolutely unrelated to medicine in any way.
All the meetings are exactly the same. You've got the person who never says a word. You've got the person who's always trying to score a point over somebody who obviously offended them 25 years earlier, you know, and you've got, I don't need to say the rest.
[00:15:09] Joe: It wouldn't be the same in your world of publishing, would it?
[00:15:12] Ellie: It is of course, it's same everywhere. And that's the great thing that you just discover that everything is actually exactly the same, but you can make crossovers. I went on to write books for older children and adults, historical novels, set in the late 19th century.
And there is a character that goes across all the books in one series. Who is a doctor. Who means to do well, but just vanity sometimes gets the upper hand, you know, and just does that little wrong thing.
[00:15:44] Joe: Surely not.
[00:15:45] Ellie: No, I can't think where I got that idea.
[00:15:48] Joe: I hope it wasn't based on me.
I'm upset now.
[00:15:50] Ellie: No. I wrote the first one before I met you probably.
[00:15:53] Joe: Thank goodness for that. Anyway, just to reassure all our podcast listeners, I've looked up AW3R. An AW3 is a laser removal device to display my ignorance. I dunno what the R means.
That's an important point and I think I've got a very good trainee at the moment, and one of his, it's almost like a driving force for him is, getting rid of acronyms. because they're divisive, they're exclusionary and he does it so well.
And even then we think we're not using acronyms, we do, medical short and that excludes parents, excludes other people.
[00:16:24] Ellie: You remember I did a project at Great Ormond Street for the Royal Literary Fund,
[00:16:28] Ellie: advising everybody in the intensive care about their professional writing. It's one of the best jobs I've ever done actually. One of the things I learned was that even in a compact hospital, like Great Ormond Street, the same acronym can have a totally different meaning or two different floors.
And you could think of the danger lurking there. Neither is wrong. If you've happen to have been working on the other floor, you might do something catastrophic just because nobody's saying, obviously you get some acronyms are worth using and some are universal, but it's jargon actually more than acronyms that worries me.
And the fear that people have of asking what people mean.
[00:17:13] Joe: We still have the two conditions, completely unrelated, HLH, Hemophagocytic Lymphohistiocytosis and hypoplastic left heart syndrome. They added extra letters to try and differentiate them, but they still, depending on where you are in the hospital,
I used, you know, which one is that then? So it is very important to be specific about such things and I think that's a really good point.
[00:17:35] Ellie: And this is also, I think there's a real problem with very clever people who go on to become clinicians have very often been cut off from the humanities at the age of about 13 to concentrate on the sciences, which is a world of jargon and, get frightened of just writing, clearly, saying what you mean, or don't realise that you might write something differently according to who's going to read what you've written.
[00:18:05] Joe: Yeah.
[00:18:05] Ellie: So you know, if you're writing to a parent, you're going to write differently for how, you know, if you're writing to your professor, it must be different.
[00:18:13] Joe: We are quite lucky because we've had very good internal, external comms and they're writing things for patients and parents, no one ever trained me in that. You know? No, it's absolutely fascinating. You've done medicine for a long time. No one told me, you know, how to write a letter that you, most medical practitioners who are, more than 10 years out, the idea that the patients are going to read all the letters wasn't really there. To me writing letters to colleagues and now the parents and patients get those letters. They read things, which is a really good thing, but we have to change how we write.
[00:18:47] Ellie: And also now a new thing, you've got to make sure nobody's just cutting and pasting.
You know, which is quite distressing if you get a letter I'm speaking as an adult here, but if you get a letter from a hospital that, it's almost what happened to you, but not quite. For me, the clock strikes 13 and I think, oh, they had somebody in two weeks before. Yeah. And this is what they made of them and it's very similar to me.
So they just sort of flopped it in.
[00:19:13] Joe: Excellent. And move on to an ethical topic that taxes both of us, I think. And it's almost well, not common, but I think both of us have this idea that, an inability to even consider resources,
when you are thinking about ethical challenges is a real problem actually.
And indeed, recent experience with colleagues who are considering abhorrent to even talk about that.
[00:19:36] Ellie: I think when I first started doing this, it was banned. We didn't talk about it. I remember the first time somebody used the word rationing in a meeting, which would probably be in, just at the turn of the century, and they were jumped on,”No, we don't say rationing”. Now, we all knew that within 10, 15 years it would be almost the most common word, but we don't have the vocabulary for it, and we certainly don't have the vocabulary for talking to families and patients about it. And I'm stumped because I find I can't even do it as an adult.
You know, I'm in my seventies now and I'm already feeling, oh, should I be having this treatment? Is this fair that I'm getting this? So there must be parents thinking, is this alright? But you know, they've got to fight for their children in a way it's easier if you're someone's advocate.
[00:20:28] Joe: And yet another level we have NICE that exists. People know about GP’s, you know, controlling the budgets, and people are aware that healthcare spending is finite, but yet at the individual area, it's much more of a challenge.
[00:20:43] Ellie: Yes.
I think doctors do give the impression that the sky's the limit.
[00:20:46] Joe: Yeah.
[00:20:47] Ellie: And I'm sure that the comms department, grand though they are, put, you know, if they, if there's a wonderful new treatment that somebody's had. They will, circulate it around the press. And then everybody will want it, but not everybody can have it.
Or if everybody did have it, a lot of other people can't get the everyday stuff.
[00:21:07] Joe: I think that's a balance, isn't it? It's a balance. You know. A number of children's hospitals look after people with very rare diseases, and when a breakthrough happens, that is wonderful, and medicine is advancing very well, and yet it can't be the case that they also are the people who look after day-to-day spending.
It's a challenge.
[00:21:26] Ellie: It's really difficult for it to be the individual clinician who's got to make the decision because you can't possibly have the overview of the budget. But the parents are going to say to you, but what about that wonderful treatment I've heard about online which has a hundred percent success rate, and I've seen photographs of children that have recovered completely. Of course you'd want that for your child. Of course you would back for it but it seems to me we've got no reply and you can't say that's not fair because that's not the game you are in.
[00:22:01] Joe: I guess it is about individual clinical decision making and ultimately, generally as clinicians, you will push for treatments for the child in front of you. But at some level there are resource issues. And again, the question's always more difficult. I think if something is a single patient use and there is some success.
That might be highlighted. And we do that as part of our ethical framework for looking at innovative treatment. But the treatment doesn't work. It doesn't tend to get published in the New England Journal of Medicine. I tried this and it didn't help. And the argument to go from one patient is really difficult. You know, it worked in one patient, should it be tried in every patient with this condition? That isn't right. Or it didn't work, does that mean we shouldn't use it? And that's why, formally conducted trials are very important. Confidence intervals and the idea of how likely the treatment is to work.
But, I think one of the difficulties, and we face this frequently is you have children who have a diagnosis that there are a few in the world and you can't really generalise. So you are really in a different situation where you're trying to extrapolate from other diseases or from very, sporadic treatments.
[00:23:08] Ellie: And children
are all different as well.
You know, even with all the clinical trials and everything, you can't be sure, ever of what's going to work. I think now that we've got instant access to international stuff on the internet, it's difficult to, because then you know there are plenty of countries, most notably the USA, where there's always someone who will take your money.
If you type in a certain condition, there's always somebody who would give you the impression that they would sort everything out for you, and that you are being given the worst possible care in the world. And we've got to find a way of grappling with that.
[00:23:48] Joe: Yeah, and some of it is, I guess in terms of an intervention that may offer a return to normal life or a cure. But we also have, the delivery of long-term ventilation or parenteral nutrition, you know that it's really governance by national frameworks and ethical norms, which are different in different countries.
[00:24:08] Ellie: Yes.
[00:24:09] Joe: I think there's challenges there about, you know, what ought to be provided, what can be provided in other country, and then do you come back to the original country having received some of those treatments?
[00:24:19] Ellie: Yeah, and who pays for that if it goes wrong and you come home, where are you on the waiting list ?
[00:24:24] Joe: Or even if it doesn't go wrong, it's just that something's being provided that wouldn't have been provided in the original country, do you then come back? These things are very interesting.
[00:24:32] Ellie: The interesting thing that it didn't exist when I started at Great Ormond Street, but exists now, is what if you start somebody on something and they won't get it when they go home because their local commissioners won't pay for it. That didn't exist in 1996.
[00:24:49] Joe: Yeah. That's a very important point, isn't it?
And now we have, been involved with a bit of work recently in the children's hospitals where high expense treatments are provided, but the people who provide that after discharge are saying, no we just can't, we can't do this.
There's really a lot of work to be done there about how that works out for government, for healthcare funders, how much is too much? And this is all part of the rationing areas that NICE doesn't really get involved with at the moment.
[00:25:13] Ellie: It deliberately doesn't get involved with, because you know, it's this thing of, when it's difficult you say, ah, it's for the locality to provide. And when it's causes real trouble, they just say, oh, it's postcode lottery.
It's the same thing. A local autonomy is a postcode lottery.
[00:25:30] Joe: Very good. Ellie, it's been very interesting. I'm going to let you have the final word. When we're having this interview in 10 years time, what we'll be discussing then, do you think?
[00:25:42] Ellie: I think we'll be discussing moral harm to staff. Quite heavily. I think there'll be a different fashion. You know, when I started this, the people who did bone marrow transplants were considered absolute gods and magicians and, you know, people, pull their forelocks when they're talking to them now it seems their regard as just like a sort of technical department and now it's the gene people who are on top.
Whether it will actually be anyone involved with clinical practice who's on top in the future.
But it is interesting watching the fashions come and go and we will of course be talking about what is intensive care for.
Is it like getting into Eton and you are proud of it if you get there, and you are going to stay put, come what may and if necessary, die there, or is it a place that fixes people and sends them to something less unpleasant and expensive?
[00:26:38] Joe: And that fits with the questions we're asking ourselves.
The ICU admissions are becoming more recurrent. Children with complexity are coming back. The length of stay is going up and most ICUs around the country will have a child in there for six months or so. And that didn't use to happen 20 years ago. And you know, long term, life sustaining therapy is becoming more normal for various conditions.
[00:27:01] Ellie: But the Daily Mail will never do a story about all the people who couldn't get treatment while that child was there.
[00:27:08] Joe: Other newspapers are available, I understand.
[00:27:10] Ellie: Oh, don't get me started.
[00:27:13] Joe: That's a very good place to bring it to an end, I think.
[00:27:15] Ellie: Yeah, I think so.
[00:27:16] Joe: It's important though, that last point that, the unseen, the unspoken children who don't get treatments because things aren't available, are not part of that discussion as much as they ought to be.
And we've definitely been talking about that more recently, I think in terms of the need for healthcare provision is getting increasing, but our ability to deliver it is not so good because of prolonged admissions, because of other things, and funding ultimately.
[00:27:41] Ellie: We've got to decide as a society what we're going to have, but we've also got to get the basics right, and then maybe fewer people will get to that point.
[00:27:50] Joe: One of the things I guess, as an intensive care doctor in a specialist children's hospital, you might expect me not to say the government's plan for the NHS is great in terms of care near a home, all that kind of stuff. But I think for many people, it will be actually. In terms of more local delivery, more community delivery.
But I do worry about the rare specialist centres and the decreased funding for them. But this is, again, resources. We're all backed down to resources, which is an ethical conundrum we're going to face increasingly as society changes.
Ellie, thank you very much. That's been fantastic.
[00:28:22] Ellie: Thank you. It's been lovely to talk.
[00:28:25] Joe: Good. Okay, so, thank you Ellie Updale, and it's been Joe Briley, your podcast host. Join us for the next episode of the Great Ormond Street Bioethics Podcast soon. Thank you.
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