Episode Transcript
[00:00:04] 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 and 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 Great Ormond Street Peadiatric Bioethics Podcast. My name is Joe Brieley. I'm an ethicist at Great Ormond Street and an intensivist. I'm delighted to introduce our next guest who's Carolyn Johnston. Carolyn, welcome.
[00:01:13] Carolyn: Hello.
Joe: [00:01:14] Carolyn, tell us about yourself to start off with your journey from, the land of ethics, the land of winning cricket teams to where you are now?
[00:01:24] Carolyn: Well I trained in law in the UK, in London, and then did a masters of medical law and ethics at Kings and one of my colleagues there was Ann Slowther who was doing her master's research on clinical ethics committees. And from that I heard about it and I joined her at ETHOX at Oxford and we did some work for the UK Clinical Ethics Network and I was hooked on clinical ethics and I was a member of three clinical ethics committees in London, St. Mary's, Central and Northwest London, so a mental health clinical ethics group. And I also chaired, or it was vice chair rather, of the clinical ethics advisory group at Guys and St. Thomas. I was really involved with clinical ethics consultation in London, and I helped with some students at King's College Medical School, and I set up a student clinical ethics committee there, which I thought was a good way of translating, you know, ethics into practice, I guess make it contemporary and topical. And then in 2017 I came to Melbourne and you very kindly introduced me to Lyn Gilham and Claire Delaney and Rose McDougall and the gang at Royal Children's Hospital. And so from that I became involved in clinical ethics in Australia, in Melbourne, and now I'm clinical ethicist at Monash Children's Hospital here.
[00:02:48] Joe: Wonderful. Thank you. And the reason I've sought you from the other side of the world is a paper you published last year in the Journal of Law and Medicine termed ‘Legal Liability of Clinical Ethics Services in Australia. Should I be more worried than I am’ so a deliberately provocative title, but I think one that's very important. And whilst I know we're two countries separated by language and law, I think there are general principles that we will discuss that I think are very interesting. But would you be able to give us a quick pressy of the paper?
That would be great.
[00:03:18] Carolyn: Yes. So with Sharon Feldman, who is a PhD candidate at Melbourne, we considered whether a clinical ethics response group, and that was our archetype of, sort of, clinical ethics service we were thinking about; whether it could ever be sued in negligence, or its members could be sued in negligence, for the advice they provide to a clinician who refers a case for consideration.
So, we went through a typical framework for thinking about claiming negligence, whether a duty is owed to a patient or the patient's family members, whether there would be a breach of duty and whether any breach of duty would result in foreseeable harm. And our conclusion is that, currently, because really I suppose threefold, lack of approximate relationship between the patient and the clinical ethics response group, no really acceptable or standard of care, or the way a clinical response group would act. And also, arguably, because a clinical ethics service provides only advice, we don't think that there is a legal duty owed by members of a clinical ethics service to a patient or the patient's family. But that I think could potentially change. As accepted standard practice of a clinical ethics service becomes more embedded or more explicit, and particularly if there is a development of including the patient or patient's family in a clinical ethics, deliberation case consultation. So, we concluded that at this stage, we don't think a legal duty is owed.
Yeah. There will be a, not a successful negligence claim.
[00:05:09] Joe: Very interesting. I guess there's a fundamental question at the heart of this, about what clinical ethics actually is. And we've analysed that recently in a paper, Dave Archard, and myself, in Archives. Because we sat back and thought, what is it we're doing? Before you even think about whether you have a duty of care and a negligence claim, what is ethics actually delivering? And your point is really well made, it slightly depends on the model you are using to deliver ethics support. In the UK we've certainly, by and large, steered clear of being anything like a decision-making body, that's for sure.
It's a clinical advice, something that supports clinicians but what you've made very well, I think is very important for us in our Great Ormond Street group because we've really started to invite children sometimes, and families to the ethics consultation. There's a feeling that seems just a moral, right thing to do. And there's lots of conversations about how that happens, what process should happen, and it really is feeling your way forward because there's a really good strong evidence base for a track record on how you should include people. So we've also published that how you might include children and families in paediatric ethics consultations, and that obviously means there may be more exposure to direct clinical conversations and therefore perhaps some level of accountability as you say, but it's still not clear how the courts might consider a claim of negligence from someone resulting from that process, I guess.
[00:06:41] Carolyn: I think that's right and I think there are two elements of that. One is, yeah, as you say, what is the role of a clinical ethics service? And traditionally it has been to support clinical staff of an institution, and that's the model that we use at Monash Children's Hospital. We support clinicians and staff there. Not directly the family, but of course our role is to provide that support to better enable patient care from an ethical perspective. It does strike me that, whether we will move forward and we've debated this about how to include family's views.
So ours is a paediatric clinical ethics response group, and more recently we've started to think about whether we should be receiving a letter or some sort of information from parents as to their view on what they want. And about six months ago, we got a four page letter from parents of a teenager, and that really did make an impact on us and our decision making.
I think once you start doing that, you are moving perhaps a little bit away from that traditional model of supporting the clinical team. And once you start then a more direct relationship with the family, then I think that sense of proximity becomes a little bit more apparent. You have more of a proximate relationship with the family than you would if you were just hearing from the clinical team.
[00:08:10] Joe: We'll put links to the papers we're discussing at the end of the podcast, so people can access them. There is a paper that Dave Archard, Emma Cave and I put in the Journal of Medical Ethics, again last year, really because we perceived that this was quite of hot area of discussion – particularly in paediatrics – and this is about you involve parents in ethics processes. One option was, as you say, writing a letter. I guess what convinced us and there was, there's lots of big documents come from the important people and you sometimes read them and go, oh, I'm not sure what this means or, but there was one very important one I think for us, which was from the Department of Health in the UK about liberating the NHS, “No Decision About Me Without Me”.
And that seems really something that struck a really strong resinatory note with us that, you know how can you have an ethics meeting, which often is about a child of a family and some of their views you are receiving second-hand and maybe they're conveyed very well, maybe they're not. So, our process is currently we will go and meet the child of family before an ethics meeting and with a few exceptions, we will invite them to the meeting. Obviously, most of those things are harm, whether there are concerns about confidentiality of other people, there can be issues, and that's explored in the paper. And sometimes parents don't want to come and that's okay as well. And then when we come afterwards to discuss the conclusions of the meeting, and I think that's a process that's worked most of the time with us. But it’s interesting, kind of, you know, this is a place where we are all evolving going forward and there's not much research here to help us know what we ought to be doing.
Right.
[00:09:43] Carolyn: Yeah I think that's right. In fact, currently we've just had a philosophy student from Monash University start with us on a six-week internship, and he's going to be reviewing the literature on this and thinking about it from a philosophical perspective so we can develop the argument and the debate around this.
I think one of my concerns is in asking the family, the parents, at first principles, that seems a great thing, of course, but, does it then put undue pressure on them? Do they feel this need to advocate in a certain way? Might there be a disparity around the ability of parents to make a contribution of what they feel they need to say?
So, I think that process easily be ironed out. And then the other issue is, and again, I don't think this is a reason not to do it. But the issue is that then around resources and time and the process you've described sounds exemplary, but it also involves quite a lot of time.
[00:10:38] Joe: Exactly.
[00:10:38] Carolyn: So that again, might be one of the issues. I don't think they're insuperable. Then the question, I suppose is in principle, is that a way to go down? And perhaps that's where we need a little bit more work and research on.
[00:10:51] Joe: I'm sure. I think your students' literary review shouldn't take you very long, but the philosophical part is fascinating.
But yes, I think it's going from first principles and trying to develop a process that seems to work. But I suspect there are many ways this can be done very well. And the key thing is dedication and support and I think there are different processes which will all maybe achieve the same end, but obviously with difficult cases, all processes will struggle a bit, I suspect, because by definition these are areas that are challenging, difficult. The cases we see in paediatric medicine are incredibly complex compared to even 15 - 20 years ago. We're doing so much more stuff now.
[00:11:32] Carolyn: Well no, I think that's exactly right.
And that was really one of the premises of the paper we wrote about legal liability. That the cases that come to a clinical ethics service are generally very complex, potentially quite contentious, and at the margins of I suppose traditional thinking around this, it's being referred because it's difficult.
And so because of that, I suppose this makes these cases more contentious, potentially higher stakes. And although we haven't seen any claims in Australia around challenges in negligence to members of the clinical ethics service, you can see that, that could arise actually, and we used a hypothetical in our paper to illustrate that. So, these are, well we just had a clinical ethics case consultation today and they are always very challenging.
[00:12:19] Joe: Absolutely. And I guess one thing we should highlight is that, the complexity in modern paediatrics is off the scale compared to 20 years ago with different machines. Children living on very high, intense support in their bedrooms at home and parents doing an amazing job dealing with it all. You know some parents run an ICU in their bedroom of their kid at home and I'm like, wow, completely in awe of them.
[00:12:43] Carolyn: Yes. Huge dedication. And of course what we've spoken is the role of parents, but interestingly, what about the input of, say, a teenage patient in an ethics consultation? How far do you go along with that one? So I think there are real ramifications.
[00:13:01] Joe: Well we certainly do. We certainly have had children able to contribute obviously the older child coming or young person coming to ethics meetings and actually some of them, you know, they are very very smart. They understand their illness more than anybody else does. Then, you know, depending on the child, obviously, and you touched on this earlier on, we serve a very broad range of patient population, so language can be an issue, so can culture, lots of things that enrich our societies, but we certainly have had children come along to ethics committee meetings and be very eloquent and thoughtful and understand the ethical questions.
There's no doubt that I think children and young people, sometimes people presume they won't understand the ethical complexities. Our experience is very different. Even when you're thinking about very rare diseases, high expense treatments, they understand. Sometimes, even more than some of the adults present, and I'm not just talking about parents, now I'll be in trouble. But that's fair.
Not everyone is interested in philosophy and ethics, but some of the young people have a very advanced view of, utility or different ways of thinking through ethical problems. And yeah, particularly with rare diseases and high expense treatments, they have a very good understanding of some of the problems that comes with that. And again, it's something we would really recommend. And I think having young people come along and meet them, and it's one of those things you mentioned earlier for parents, is it intimidating? Do they feel they can't speak? I would say almost never in our experience since doing this since about 2013 / 14. And they will speak as well as they're able to, and one of the roles of being the chair is ensuring that their voice is heard. We have a bit of work. We're just try submitting now about interviewing parents who've been through this process during COVID. And again the feedback from parents is that there’s no real… well it's intimidating, it's a bit scary. Would you rather be there or not? Absolutely. No parents said they wouldn't have wanted to take part of the ethics committee. So I think, the worry that it might be intimidating and a bit scary, there are ways of maybe dealing with that with our preparation.
[00:15:06] Carolyn: Yes, so I think what's really important here is the value it has in acknowledging the importance of the family's voice the patient's voice, and that idea, you matter, your views matter, and we are going to take them seriously. So that's part of the mix, I think. But I think it has a real instrumental value.
[00:15:25] Joe: I think when we did an interview, again a bit of research with the families who have been through this, some of the voices are that this, even a step further than you suggest, it suggests that the institution values their child. And I think that's quite an important message to hear. And obviously that's not every single parent. There are some difficulties with involvement in some of this because some of the cases can be very complex and challenging, but in general, the feeling is that they, this process of involving people to think about their child and try and help with the way forward in a complex situation and is very kind of rewarding for the parents. They say okay, I'm feeling involved in this at a level that I've not maybe been always. I think there are very positive things here, but it's how you support them adequately.
[00:16:09] Carolyn: No, I think it's a work in progress, isn't it?
[00:16:11] Joe: Good. Good. So what next then, apart from your PhD student exploring this area, what else for you?
[00:16:16] Carolyn: We have a number of medical student members of our clinical ethics response group, and they contribute to our training sessions and provide very helpful notes when we make the ethics report.
I think it is just a development of what we do at Monash in a bit more broadly. I remember when I was in London, one member of an ethics group I was involved with said, ‘really the clinical ethics case consultations are just really the tip of the iceberg’. So I think what's important is broadening out the impact of a clinical ethics response group, perhaps by way of training or debriefs. And recently we did a Grand Round, reporting on a quality assurance project that we've just run. And it was very interesting that not so many members of the audience had heard of our group. So, I think it's about really promoting the work we do and trying to make it relevant and useful.
But apart from Royal Children's Hospital, there are a number of emerging and newly established ethics services in Australia and they're making quite an impact.
[00:17:24] Joe: Good stuff. Interesting that our biggest change, case consultation's always been the biggest part of the work, but again, the last 15 years, the two areas, one, as you say, education and training, there's a real thirst to have healthcare professionals around the institution teaching and training in this area. And the second is the idea of helping protect against this thing called moral injury and analysing challenging cases. One of my colleagues spends many of her days doing just that. And not all the cases that come to the ethics team are, not all the challenges come to the ethics team. I think healthcare professionals, parents, children, they tackle complex decision making on a daily basis. And as you say, there's a tip of an iceberg thing where the ethics team might get involved. But actually this is daily paediatric practice now, and I think people do a very good job and deal with ethics all the time. It's not something that can be, devolved to some committee if you like. It's normal paediatric practice and we help with the cases that just go over that one area where things aren't able to be managed, but some of the challenges to how the wellbeing of our medical and Nursing teams, Allied Health Professionals, others, and indeed children and families, is a daily thing that we can help with I think. So yes, reaching out, I think your point is really good.
[00:18:45] Carolyn: Yeah. The other thing actually its just reminded me, there was an interesting case reported a couple of months ago in a court in Sydney about a, I think 16 or 17-year-old, and the court mandated treatment against the wishes of the parents, William, on the basis of the best interest of the child. But I did think, what if that case had not gone to the courts, but instead come to our clinical ethics response group. We might have taken the view that actually the parent's perspective, which was that the harms of this ongoing treatment would've outweighed any benefits - we might have taken the view that, in fact, that fell within the zone of parental discretion. And it draws me to think about how cases do come to an ethics response group, which ones go to court and what happens if the case referral goes to an ethics group and / or the court, and might they come to different conclusions? And indeed my different ethics groups come to different conclusions.
I think one thing that we're planning to do is to put this case out or this type of scenario out to the various different paediatric ethics groups in Australia and just ask them, do you think this falls within the zone of parental discretion? And see if there is room for manoeuvre there, or where there's uniformity of decision making.
[00:20:09] Joe: Interesting. It takes me back to the UK clinical ethics committee round robins they used to send around. Similarly in research ethics, should you make the same decision based on the same information? And of course, who's in the committee varies, how it's run varies. And I guess one, one comment is, I'd be very worried if all ethics committees agreed with the courts. That sounds bad, doesn't it? But I guess some think ethics is not just law, right? But ethics must be within the law. This is a contentious chat for another day right?
[00:20:38] Carolyn: I think that is for an interesting chat.
[00:20:40] Joe: This is where I'm in trouble. The law isn't always right. Is that okay?
[00:20:44] Carolyn: As a lawyer, I would say that is right, but this question of what you should do I think requires perhaps a different perspective and certainly room for manoeuvre and disagreement. And it does raise the question whether, a clinical ethics response group or service should have a consensus view or not. I don’t know what you do at Great Ormond Street and with these particularly challenging cases that might not be achievable. I think at the heart of this, it's all about having clear and defensible processes and real transparency of decision making and informed members of an ethics service. I'm referring to lots of anecdotes from my time in London now, but somebody once said to me “it's more than just sitting down in a pub with a pint and a packet of crisps”. And of course it is that it is much more than that. It's got to be informed, really clear thinking around different ethical frameworks and theories to come to a defensible position.
[00:21:39] Joe: I guess your point there, I explored that in one of the papers, is should we come to a consensus? What is a consensus? And actually, ‘12 Angry Men’ time, is the person who disagrees with the group always wrong? No. Is it about right and wrong? Is it about finding a way forward? I guess for most of these paediatric cases, a decision must be made. So there must be some decision made one way or the other. And we support that happening.
Reflecting that there isn't consensus within the group, or indeed within clinicians, it's quite interesting about how that's transmitted to parents and children. “We are not sure something this, something that”, and very often in my experience, parents would rather there's an honesty about how you discuss things like that rather than “we've on balance, we've all decided this”, was there agreement, is there a disagreement? So I think that's an interesting area.
Carolyn, thank you so much. That's been really interesting.
This has been a Great Ormond Street Bioethics podcast. The next episode will be available soon, and the papers we've talked about will be at the bottom of the podcast. Thanks everybody. Goodbye.
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