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. 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 childrens' 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 transplants 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.
Hello everybody. Welcome to the latest Great Ormond Street Hospital Peadiatric Bioethics podcast. My name is Joe Brierley. I'm director of the (Paediatric Bioethics) Centre and I'm extremely excited to have Anna D. Goff. Anna, what's the D stand for by the way?
[00:01:18] Anna: My middle name is Delaney.
[00:01:20] Joe: Delaney. Very good. Who is a bioethicist from Cornell in New York, and we saw a paper she published recently and thought it was terrific and wanted to get her on the podcast and talk about the paper.
But firstly, it'd be great to hear about you, Anna, and how you got into bioethics.
[00:01:37] Anna: Yeah, absolutely. I originally was a pre-medical student in college and took my first bioethics course as a freshman and ended up just being hooked from there. I was really interested in the topic. Initially thought I wanted to pursue a career in medicine with a focus in ethics, and as I continued to take courses and start to get immersed in the clinical environment, really found that, you know, my calling was more toward bioethics, so I ended up doing both my Master's and PhD in bioethics at Case Western Reserve University in Cleveland, Ohio, and I'm am now in the first year of a two year fellowship program at Weill Cornell Medicine in New York City.
[00:02:18] Joe: Yes. Apology for my bad pronunciation.
Weill Cornell. There you go. But fantastic. And how are you finding that?
[00:02:24] Anna: I am loving it. I really enjoy being in the urban city environment. Yeah. I love the patient populations that we work with, you know, the diverse range of care that we're providing. And everyone here has been incredibly welcoming.
I've got some fantastic mentors in our faculty members.
[00:02:40] Joe: I’m sure. You have. What's your day-to-day activity like? Do you, you go and see patients, do you go with a mentor? Do you see them individually? What's it like day to day?
[00:02:49] Anna: I spend about half of my time on clinical service. So we have a 24-7 ethics consultation service, and we basically get called about any sort of ethical issues in the hospital.
As part of the process, on the clinical end, we do go and see patients as part of our standard of care. We go, we interact with patients, their family members, any surrogates that might be involved, as well as the healthcare professionals. A huge piece of what we're doing is facilitation and aiding in communication.
So we will often end up having large multidisciplinary meetings with relevant consulting services, and really just try to help sort through whatever the ethical issues going on are. We sometimes will do those meetings in person. We prefer that when possible. But with the pandemic, have had the introduction of virtual meetings, as I'm sure many have.
[00:03:36] Joe: Yeah, very much.
We've actually gone almost entirely over to that because when we do a bit of research with the people we serve and the parents and our children's hospital, they almost prefer the Zoom meetings and certainly our administrator, or sorry, other video conference facility, things are available.
You know what I mean? Yeah. But I think it's a almost a preference for some, we're very open to face-to-face. I was like you thinking, we definitely should do face-to-face as a preference and priority, but our practice hasn't born that out, which I think is interesting in itself.
[00:04:05] Anna: Absolutely. Yeah. So that's a picture of the clinical work that we do. We do spend a fair amount of time in the hospital, on the ground working with folks. And then I also do have academic responsibilities. So I'm involved in medical education for our students. I help facilitate small groups in a couple of different courses across the curriculum.
And I do have quite a bit of academic research time as well. So I'm doing a lot of writing some research, working with faculty members on different projects.
[00:04:32] Joe: That sounds fantastic. I'm very jealous already. Is it a single hospital you're attached to?
[00:04:36] Anna: So we are attached to New York Presbyterian, which is one of the largest hospital systems in New York State.
New York Presbyterian is split between Weill Cornell and Columbia's medical school. So we are responsible for a handful of different hospitals under the New York Presbyterian umbrella. Our primary coverage is at Weill Cornell Medical Center, which is on the Upper East Side in Manhattan.
But we also, for example, consult at a behavioural health hospital out in Westchester. As well as our lower Manhattan Hospital, which is a little bit more of a community-oriented hospital system.
[00:05:09] Joe: Wow. Very interesting stuff. So, moving onto the paper, which as I say, spoiler alert, we rather liked, so type of emotional impact of clinical ethics work on clinical ethicists.
So, obviously as ethicists we are interested in that. A qualitative study, it was published in the American Journal of Bioethics Empirical. What made you think about looking into this area? Why did you first think, well, you know, clinical ethics work is that a bit of a burden on people doing it?
What drew you to that?
[00:05:36] Anna: Yeah, it's a great question that I've been asked by many people. You know, to be completely honest with you, Joe, long before it occurred to me that this was something that I could study, it was just an experience that I was having myself. I was rotating on a clinical ethics consultation service during graduate school at our public safety net hospital, Metro Health System in Cleveland.
And during that experience, came into contact with a handful of cases that really stuck with me that, you know, they left an impression is maybe the best way to put it.
[00:06:06] Joe: yeah. Got it.
[00:06:06] Anna: You know, I felt as though people were turning and looking to us for support and for answers, and they were distressed and uncomfortable, and the question really was, you know, what can I do to help support them?
And, how do I think about these really difficult situations where, there truly don't seem to be any good options. And, the weight of navigating and working through those kinds of situations was really what prompted me in the first place to start researching this. I wanted to know if I was the only one who was experiencing this kind of emotional burden.
I had reason to believe that I wasn't just from conversation and support from my mentors, but it really was born out of my own personal experience, to begin with.
[00:06:49] Joe: Fabulous. I think it's always very good when you have personal kind of you feel or see something personal yourself and want to go and learn more about that and research it.
So good on you. That's really good. And we can share some of our concerns about that we've had over the years in our group. So I definitely think there's something there and I'll explain a bit about our very minimal attempt to try and help with that. But yeah, so tell me about how you did the work.
What did you do?
[00:07:13] Anna: Yeah. So we did this study in the United States context. We wanted to keep it to one healthcare system just for continuity's sake. We really prioritised hearing from a diverse range of perspectives within that group, though, so we wanted folks who practiced in different settings with different patient populations, had different professional backgrounds, different structures to their consultation services. So what we ended up doing was creating a recruitment survey for the clinical ethics consultation affinity group Listserv within the American Society for Bioethics and Humanities. And it was just a very brief survey.
It asked a couple of different demographic questions. We sent it out to the Listserv. We ended up receiving about a hundred responses to that survey. And from that we selected our sample population. So we interviewed, I think it was about 10 clinical ethicists based just on random selection from the Listserv of folks who had completed the survey. And then from there, we ended up doing some thematic sampling based on some of the things that were coming out of the research. So, we realised we wanted to have folks from different professional backgrounds, for example, because we were seeing that different folks with different training, were sometimes having different types of responses to our questions. So that was kind of a little bit of insight into the process of how we selected folks, but it was 34 interviews that we did between May and September of 2023.
[00:08:38] Joe: Okay.
And of course the papers available for people to read, but hopefully without a bus spoiler alerts too much.
What was your main finding?
[00:08:47] Anna: Yeah. Fantastic. So we came away with four major themes in response to the research. The first with it was that clinical ethicists do seem to be very significantly affected by the work that they're doing from an emotional perspective. Second was that there's a lot of lack of clarity about the role that clinical ethicists are assuming and the role differences and role uncertainty seemed to fuel some of the emotional challenges that folks were facing. We also observed that organisational structures seemed to significantly shape professional emotional experiences. And then finally our last theme was that clinical ethicists seem to be employing a wide variety of different professional and personal coping mechanisms in response to the different adverse emotions that they might be experiencing.
[00:09:34] Joe: Wonderful. I guess in my area, because I do intensive care medicine for children as a sideline these days as well as ethics. We've done a bit of work looking at kind of wellbeing and welfare of the people looking after very sick children. Some of the messages that would be very similar, I'm sure, but I wonder if we can move on to maybe the difference from our system. You mentioned healthcare systems being different, and of course that's hugely important, but also the way that clinical ethics is practiced is quite different as well. So, in Europe and certainly in the UK, ethics committees exist, which are often, you know, run by the institution but not of the institution, with a group of people coming together to discuss ethical issues. In the US there's much more of an individual ethicist approach, as you say, going to the wards, seeing people. Is that something you found in your group? Was the group largely people who were individual ethicists working in hospitals versus being part of a committee, for instance?
[00:10:31] Anna: Yeah, a large proportion of our participants were individual clinical ethicists following that model or working on individual, kind of, small team approaches where they had some colleagues that they were working with. We did interview several individuals though, who were members of ethics committees, but they were individuals who were still going to see patients and different ethics committee members on their service would take rotation on who was on call.
So there was some individual model within that broader, committee model, if that makes sense.
[00:11:01] Joe: It does, and it's one of the envious things we look to you because yours obviously a very well-funded model, whereas ours is, certainly in the UK, is a bit more done with Goodwill, with a bit of funding but not the type of stuff you guys have.
But I wonder, one of the other things that I think might be important, and this may be completely wrong, but certainly about decision making. So one of the hard things, when you look at things that might be part of the substrate for will come onto moral injury, moral distress is that idea that you know the right thing to do, but you can't put into action.
You can't make those decisions. So in the UK for instance, ethics committees are not decision makings. They're advisory only. So in the US, would you say the ethicists are they making decisions about clinical care or are they simply suggesting how things might be? What's the kind of a recommendation at the end of an ethics consult?
[00:11:46] Anna: Yeah, that's a fantastic question and actually is something that we're currently in the process of working on a manuscript on. The study actually was part of my dissertation research and one of the chapters was devoted to this particular topic.
You know, the role uncertainty that was really described in these interviews by participants was actually, in part this question that you're asking. What is the extent to which clinical ethicists are actually responsible for and making decisions within the context of clinical care? And if you look at something like the ASBH core competencies, they indicate that clinical ethicists ought not be decision makers in patient care.
And largely our participants described assuming advisory roles in their consultation work, but there was also this underlying sense that, people don't disregard ethics consultation recommendations lightly. So if the ethicist comes in and makes a certain recommendation, certainly there's this, you know, view that it's a recommendation and it's communicated as such.
But, you know, I had some participants express to me, that it's not as if they're not going to follow what I'm saying. So it feels as though I'm making this decision, even if I'm still contributing in an advisory capacity. So there was a sense of responsibility and, at points where they were difficult decisions, burden that participants described, assuming as a result of their role in patient care.
[00:13:12] Joe: That's super important, isn't it? You can see that ethics committees go to the more difficult cases. Otherwise, why would they exist? And then if that's happening repeatedly you can see that substrate, whatever we call it these days, but it's moral injury, moral distress and poorly defined as you said in the paper.
It's something that's there and people struggle with the idea you are making, maybe existential decision making or something that's making a big impact. And that repeatedly happens, and how do you then, protect people from burnout, all that kind of stuff. In the world of an ethics committee, it's not really been thought about, I think before your paper in a formal way.
You know, the wellbeing, the welfare of a clinical ethics committee or a clinical ethicist is kind of probably way down the list of things a hospital is very concerned about, if I'm very honest. That's why this is important because if we don't start thinking about this ourselves, probably no one else is going to.
That was my first thought when I read your paper. But, is this something you've seen from other centres, or, your experience led you to this work and you said some of your mentors had conversations, but there's really not much in the literature about this, right?
[00:14:22] Anna: Yes there's not really much that's been done from an academic perspective on this. There was one really great article written on burnout in clinical ethicists back in 2020, and I'm not sure if you're familiar with the book cases that haunt us, but those capture some emotions that clinical ethicists had in response to their work.
But it was more of kind of this academic view of the most difficult cases that clinical ethicists engage with versus, this really vulnerable self-reflection about, your own role and experience within a consultation. And, I would say, that there's been increasingly some hints at this aspect of the work at ASBH that you've seen a burnout panel popping up here or there.
There was a study done on clinical ethicists during COVID-19 by Connie Ulrich and colleagues that found clinical ethicists describing their experiences in terms of moral distress for the first time. So it's something that I think has started to pop up some, but largely clinical ethicists are still focused on establishing value and worth to their institutions, and as a result, it's not being thought about as much, you know, what is the cost of the work that we're doing and how is it affecting us as people?
[00:15:36] Joe: Great. Thank you. I guess the other thing, on this podcast we can’t not bring to the fore. Whenever we have our UK clinical ethics network, there's difficult cases, that sort of thing, and people talk about challenging stuff and certainly over half of it seems to be paediatrics to do with children.
People seem to find that tougher now. Of course as a paediatric ethics committee, we are sitting there going, ‘well, yeah, we do see some really hard things’. But in your experience, how much of the work you do, the difficult cases are about children or parents and how much to other things?
[00:16:07] Anna: Yeah, paediatric and adolescent patient care can really give rise to some of the most difficult ethical issues.
You know, one thing that really stood out to me during these interviews is that Folks who have a personal connection to a certain patient population were impacted by the work that they're doing with those patient populations. So, for example, we had several participants talk about having young children and the challenges that come with doing ethics consultation, in cases where they involve children close to their own age. That wasn't the only patient population that came up. For example, we had participants who talked about, having a loved one who recently attempted suicide and being consulted about a patient who attempted suicide. Or something like that.
But it seemed like it was disproportionate with children that those cases were some of the hardest ones that folks talked about. I think it was on some level because of personal connection and on some level, because we think about children as generally being healthy, not being in these really difficult situations that we're being consulted about.
So when we are called about it, it can be particularly distressing.
[00:17:13] Joe: Yeah, until recently we've started seeing adult cases to support other institutions, but we're a children's hospital, so we kind of have that as our bread and butter. But the hardest cases within paediatrics are particularly challenging in terms of complex questions. are very, very complex population these days and rare diseases and innovative treatment. So, it is a different world, I think. But, I guess one thing that comes from that, when you were talking to your interviewees, one thing we've had in a previous podcast and Carolyn Johnson from Melbourne now, has looked at the legal issues around ethics committees and ethics work and, you know, almost suppositions really about what might be an issue. Was that something you found in your group? Were people worried about any legal repercussions of the ethical advice they gave or is that something in the US is not so much of a concern?
[00:18:08] Anna: You know, it didn't seem to come up all that frequently in our interviews. I will say that in the US context, and, this came up in our interviews, is that clinical ethicists are working very closely with hospital legal attorneys and ensuring that, they're obtaining legal counsel if there's concern about a legal component of the case. I will say that the current political climate in the United States came up quite frequently in these interviews, which again, this was happening back in 2023, so the context was a little bit different, but there was a lot of concern about public perception of recommendations that might be made or paths of care that are pursued.
But it was more that, I would say than concern about actual litigation at least with the clinical ethicists themselves.
[00:18:54] Joe: Yeah, I would say we're the same actually, I mean, there's not a case that's been involved with the courts about someone suing an ethics committee or a legal redress or anything.
Far more is the concern about, public challenge, which is part of the challenge that healthcare is having more generally, I think, so again, ethics is part of that system. It's not immune to it. But, yeah, I think people are more concerned. And I guess in our group, the way we work, we have professional members and what we call lay members.
And so professional members are often linked to healthcare systems, but lay members are people from the community. Might be, a local school teacher or children's author, somebody brings something about the broader paediatric world into the committees, and they're really useful, really helpful, but they feel a little bit vulnerable compared to people who work in institutions and feel a bit more protected.
In terms of your world, I guess all ethicists are, if you like, on staff , is that the right term to use? They're employed by the hospital, is that right? Or are some of them from outside the hospitals and independent?
[00:19:54] Anna: Yeah, that's correct. So most individuals are either employed by the hospital or if it's an academic medical centre, sometimes they're employed by the university and then contracted out to the hospital.
So, in one way or another they are hospital employees, or hospital affiliates.
[00:20:12] Joe: So they'd feel reasonably protected by the hospital itself if there were difficulties, like people got very angry about something they'd done or something. Yeah. Okay.
[00:20:20] Anna: Yeah, that's my sense.
[00:20:22] Joe: Cool. So, we're coming to the end.
That's really good. We've had our time, 20 minutes has flown by, right?
[00:20:30] Anna: Yeah, absolutely.
[00:20:32] Joe: Where do you think you will go with this next?
[00:20:35] Anna: Thays a great question. One thing that we didn't talk too much about, and it was in part because it was more in the analysis of this work that is coming in forthcoming publications, is this idea that the role of clinical ethicists is very different than that of other frontline healthcare professionals.
And, where moral distress language has become the dominant narrative when it comes to talking about distress around ethical issues in medicine and the experiences of healthcare professionals. We, have, pretty strong reason to believe from these interviews that at least some of the time, it's not actually moral distress that clinical ethicists are experiencing.
So, we introduce in the paper during the discussion this term, secondary moral distress, to describe the idea of, someone being affected, you know, by their role in assuming a supportive or therapeutic role for individuals experiencing moral distress. And I think this is really important, clinical ethicists are not the ones providing bedside care.
They're not the ones turning patients. They're not doing dressing changes. They're not doing surgeries. That's one direction this work needs to go is really thinking more about what it is that clinical ethicists are doing and understanding their role so that we can understand the impact of the role on them.
So, I see that being one potential future direction. I also am very interested in expanding this work beyond the US context. We've talked throughout this interview about some of the differences between the US and the UK context even. And I'd be interested to see how the results might vary from population to population.
[00:22:07] Joe: Yeah, we'd be very keen to collaborate. That bystander injury is well described elsewhere, but not in ethics again, so that would be pretty novel stuff. So, we were worried about this probably about 10 years ago, and we thought, is everyone in our group okay?
How are they managing with things? And the first thing we did, we had drop-in sessions online with a psychologist, but they were really hard to sustain, and people didn't seem to want to kind of wander in there. So, one of the main things we do from our paediatric bioethics group is we look to tackle moral injury distress in the hospital. So Ann McNiven, one of my colleagues, who's again, subject of a previous podcast, she runs sessions for people on the floor trying to combat this idea and go through that, but with an ethics background and teaching and training about ethical principles around the hospital, which is very well received and works well.
In our ethics group, we've made routines, so our ethics case reviews, when we have them, we always let everyone disappear at the end and have just a pause for the ethics team. Just a, are you okay? Because. I think my worry was some people are quite remote. If you're in the hospital, it's easy to catch up with someone after and have a cup of tea and say, oh, that was really hard, wasn't it?
What do you think? Are you okay? Which actually is the most useful thing I think we can do about moral injury and moral distress, that informal touching base with people. But that is really hard if you're remote. That's one of the challenges with that. People might join us as part of our ethics group from one of the other countries in the UK I'll say.
And I think, you know, what's it like when they just leave that high intensity area where there's a very difficult child situation being discussed and families, brilliantly managing, but sometimes in a really tough space, and then they have to turn around and put the kettle on and feed the dog, whatever it is, you know?
And I think that's always a worry to me, that immediacy of going from this very high intense area of emotion and, you know, challenge, to a kind of a routine area and I know in other areas of life that's been associated with a problem in wellbeing and welfare, that kind of lack of coming down, if you like, lack of a decompression.
And so that'll be interesting this form part of your work, I think. That area of, how do you make sure people are okay after these high intense interactions. I wonder whether there's something in how we have to more formally look at that. But anyway, we've done it informally with a chat at the end for 10 to 15 minutes, which people seem to like, they appreciate.
Does it do any good? No idea. So we're almost trying to tackle something you've raised without knowing it, without measuring it. When I put the scientist hat on from my intensive care, it's like, why are you doing that? Then if you can't measure it to know it helps. But sometimes things just feel a good idea.
[00:24:51] Anna: Yeah. My sense is that folks are kind of just doing the best that they can right now, and that is one way to ensure that you at least have a touchpoint with your staff about how things are going. One of the most interesting populations within our study group that I really enjoyed talking to was clinical ethicists who are the only clinical ethicists at their institutions and the isolation that can come from doing this work.
And, they found benefit in connecting with other colleagues from different services such as palliative care, psychiatry, but you know, until you're with people who are doing the same work that you are and seeing the same things you are on repeat. It's not quite the same. So, it's a similar issue I think for those populations as those who are working maybe remotely.
When it comes to how do you come down, how do you decompress if you don't have colleagues that you can easily access?
[00:25:39] Joe: I think that's super important. I mean, the leads of our ethics team before the pandemic, we set up a regional bioethics forum for that reason to come and sit together and go, oh my God, you know, and just maybe chat with colleagues who are doing the same thing in a different center. And as you say, some people work where there aren't many ethicists around. And I think they're the people who are amazing people who can get on and do that kind of in a solo environment where I guess the ask is pretty tough.
Can be quite relentless. But yeah, the support you can give them as an outreach from another center that's got, like yours, more academic and more people around doing fellowships and stuff is super important, I think, but probably under recognised.
[00:26:23] Anna: Absolutely. Yeah. The difference it makes to even just have a mentor to walk back to the office with after a difficult case is something that I've always had the privilege of experiencing and it's not something that everyone within our field has. So, finding ways to create that sense of connection without, you know, the academic medical context, for example, is really important.
[00:26:43] Joe: Excellent.
Anna, it has been absolutely wonderful to talk to you.
Thank you so much. That's Anna Goff from New York. We couldn't afford to fly her over, but we're very happy she came on our podcast today. So, thank you for that. This is the latest episode of the Great Ormond Street Paediatric Bioethics Podcast and we'll see you soon for the next one. Thanks everybody.
Bye.
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