SHE Pod Season 2 Episode 9: Linda Sheahan and Anne Preisz on Clinical Ethics

4:36AM Aug 31, 2021

Speakers:

Kathryn MacKay

Anne Preisz

Linda Sheahan

Keywords:

ethics

clinical

clinicians

anne

people

consultation

space

healthcare

thinking

service

question

restraint

area

decision

mdt

linda

model

support

academic

complex

Hello, and welcome to the SHE Research Podcast. I'm your host, Kate McKay. And today I am joined by Anne Priesz and Linda Sheahan, from our Clinical Ethics team at Sydney Health Ethics. Hi, Anne. Hi, Linda.

Hi.

How are you doing?

Thank you.

Excellent. So Anne and Linda, you're the first of our clinical ethics team to be on the podcast with me. And hopefully, we'll have some other members of the team. But I'm hoping that you can introduce our listeners to what clinical ethics is, and what each of you do. So maybe I'll ask each of you in turn just to kind of introduce yourself and tell us what you do. Anne do you want to go first?

Sure. So my name is Anne Preisz, as I said, and I'm the Clinical Ethics Lead for the Sydney Children's Hospital network. So that encompasses Randwick Hospital, Children's Hospital, and also Children's Hospital Westmead, but also their college, which is our hospice. So it's quite a big area.

Mm hmm. Thank you. And what about you, Linda?

Yeah, thanks, Kate. I'm the Clinical Ethics consultant, I run the clinical ethics support service, its Southeast Sydney Local Health District. Again, like Anne it's a fairly big geographical area, there's sort of four major tertiary referral hospitals in there, community services and the Royal Hospital for Women. I guess my other hat is I'm a clinician in the rest of my time, I'm a palative care physician. I work primarily down at St. George hospital here in Sydney.

Wow, very busy people spread across multiple hospital campuses, it sounds like. So um, I guess I wanted to ask you, what is clinical ethics at the level of your practice? What is it that you do when you do clinical ethics?

Do you want to start Anne?

Sure. I mean, this is a question that gets asked frequently, because I don't think there's great capacity and knowledge about what clinical ethics is. I mean, I think about it as what we ought to do in healthcare, I think there's a lot of what we can do as medical technologies increase. And the questions about complex technology in clinical care, are getting much more difficult as the possibilities become more possible, you know, we can now keep a child alive pretty much indefinitely, you know, the ICU mortality rates are dropping exponentially, and they're now approximately 2.7%, for most modern Western PICUs. So the question is, then become what should we do? And that then becomes a question of values. And so a lot of what we do is, is think about those things, we try and create reflective spaces, moral spaces, to think about these things, which are less possible now in modern day healthcare as we get acute care time constraints, and, you know, resourcing issues, are, you know, increasing. So what clinical ethics tries to do is sort of multifactorial, I think one of our major roles is in capacity building and education, and helping people think about these things more broadly. And that occurs in, you know, education sessions, in looking retrospectively at ethical cases, or clinical cases that have had ethical issues in them. And also grand rounds, those sort of things, forums, we do a lot of that. But we also do quite a lot of reflection by a particular team, with particular teams, looking back at cases that they've found troubling or perplexing, and also medical student teaching. So we try and infiltrate many, many areas of the healthcare setting and spread the word about clinical ethics and that it doesn't have all the answers, our role is very non directive, we try and support clinical decision making in ways that are supportive and not directive. Models differ, but our our model is to be supportive. So we try and highlight ethical principles bring in areas of philosophy and ethics more broadly as a system and bring it into the clinical space. So as Linda often says, it's a translational way of working and I think that really does encapsulate a lot of what we do, but we also do involve ourselves in research in in, in certain areas and often in ways that integrate with particular clinical disciplines. And we really try and promote that because that actually helps capacity building and the other thing we do is try and develop the service and more as I suppose keeping it alive, keeping it... seeming... having a value in in the modern day healthcare setting which becomes more and more resource scarce and so therefore, our service often gets squeezed because unless people understand it, they they can often see the value.

That was pretty comprehensive. I'm not sure I have too much to add to that. I mean, I guess, just to highlight a few things that Anne's probably are already said, I think. I think the modern healthcare system is increasingly complex. And we all have always known I think that values underpin decision making in the healthcare setting. And I think as healthcare becomes increasingly complicated, navigating those values, understanding them, mapping them and prioritising them can be increasingly complicated, particularly to healthcare practitioners and health service managers that may or may not have any sort of explicit training or experience in in ethics or bioethics. So I think, you know, clinical ethics really aims to help healthcare practitioners understand and explore the values at stake in healthcare decision making in a systematic way, and to reach decisions that really reflect that complexity in a more robust or rigorous kind of fashion. And, Anne sort of touched on the main kind of types of work, things you do in that. The capacity education piece is huge, like constantly trying to help clinicians build their own capacity to understand the underlying values and how to navigate that complexity when they have to make clinical decisions. We also do, you know, hot case consultation where there is uncertainty or, or conflict about what should be done in a particular setting, we can come in and help facilitate decision making, using sort of structured clinical ethics approaches and stakeholder engagement sort of techniques. There's a huge organisational ethics piece, and that's really just about getting ethics at the table in the health service management space, so that management and executive decision makers can sort of, I guess, translate the values on the wall into practice. And that's a huge part of, of a structured clinical ethicss service job in, in, in our setting here, in particular. And then sort of finally, there's that research academic piece, which we know we're going to touch on a bit later, I try to keep that translational tool that Anne's talking about is really getting ethics out of the ivory towers of the university and translating it into a way that can be applied in practical terms in a clinical case. So we try to keep active in the academic research space, connected in that space. And really, that's with a view to translating some of that stuff into sort of real world decision making in the in the clinical settings. So yeah, I mean, Anne's summary of that, as she opened that is correct. It's really a careful and deliberative analysis of the 'should' in healthcare. Should we rather than can we is kind of the hardest thing, I think, as complexity increases. So that's the domains in which we try to deliver that.

Yeah. So that's a lot of different domains. And just to kind of capture that, it sounds like you've got one bit that's very education and capacity focused, trying to work with clinicians, and also medical students, then you've got one bit that is perhaps clinical case focused. And then you've got the research part. And I'm wondering what the clinical case part, what does that look like? Does that look like consults or is it something else?

Yeah. Yeah, I mean, basically, yep. It's clinical ethics case consultation. It's involving clinical ethics prospectively to help teams and interdisciplinary kind of groups, understand the issues that are at play, or the ethical underpinnings for particular areas of uncertainty or moral unease. And then using kind of clinical ethics approaches in a structured way, help the people who are involved in that decision making, understand the pieces underneath and then more robustly navigate a way through to s- some consensus outcomes. So it depends on the type of case referral as to exactly how that looks in terms of structure. I know, for us, we sort of have three levels of case consultation, depending on the questions being asked or the specifics of the case itself. And, Anne's, and the Sydney Children's Hospital Network structure around case consultation is slightly different to ours. But you know, the goals are the same. The goal is facilitated decision making, we're essentially a resource for the clinicians to use to make better decisions for themselves. But it's a supportive role rather than the ethics police sort of role coming in and giving advice. So it is like, you know, single case consultation, but it's approached very much in that iterative, deliberative, structured way to help the primary decision makers, the clinicians who are asking for help navigate that complexity and come out with a more rigorous answer. Anne do you want to add anything to that?

Yes, sure. So, I guess one of the things in developing our service has been really thinking about what is the work of clinical ethics and sort of framing it in a way that sort of integrates all those elements that Linda's spoken about. Our levels of conference consultation, which are sort of one, two, and three, there's a lot of crossover and you've talked about you know capacity building and consultation being separate, but actually, they completely inculcated into each other because, you know, often cases come out of the capacity building that we do. And you know, someone will ask us about a case. And that becomes a question or what we say is a level one consultation, where it's just a question. And that is generally a confidential question that can be discussed briefly, and may actually involve triage into something like governance or law. So sometimes, you know, people don't fully understand. So it might be more a governance issue that requires that input, so we just triage that author- or medical legal issue. But the level two consultations we think of as something that might involve us attending... one of the clinical service attending a multidisciplinary team meeting on a regular basis. But it also might include our more complex, specific education, like reflecting on an ethical case that has been... so retrospective review of a case. And then our third level is what we call at clinical ethics responses, group response. So we would have, we have a group of clinicians and you know people who have training in ethics and interested in ethics, that we call on to respond to complex dilemmas that are generally require a broader perspective from a group of clinicians. So that would mean getting all the clinicians that are involved in that case into the room, along with three or four of our clinical ethics response group, and then deliberating on that in a very sort of structured way. And so that's the sort of three levels of our consultation and that the third level involves then helping bring up options, but the team are the one who generates the options, I think that's important, they generate the plan, we just highlight the principles and the tensions, particularly when two or three or four even principles may be in tension. And the complex part is how to prioritise those those principles, and to think about them in in ways that actually can move things forward. Because, as I think about it, you know, we have what we should do, we have law, which is what we can do, but in the middle is this sort of zone of clinical pragmatism or possibility where we have to decide what is possible in that context, in that space, with the resources we have, with the family constraints that we might be dealing with, and with what's happening with that child at that time. So there's a lot of things in play, and we consider that quite deeply with the clinicians, but clinical ethics has no separate authority, the authority always remains with the clinician to refer the case.

Right. Thank you, that was really clear and helpful to give an idea of what the kind of different levels of a consultation that might happen, that's really helpful.

I should say too that, that's not everybody's like that. And that's what you know, so there are very differing models, and some have more of a an ethics committee that responds, you know, four times or gets together to four times a year, and cases are brought to that. But ours is a much more responsive model, we aim to respond within 48 hours.

It's interesting, though, Kate, you know, as Anne was talking, you know, both of us have kind of come in on the ground level and are building these services, which is still very much in its infancy in terms of how far we're down that track in Australasia versus other countries around the world, Canada, including, who've put a long way down the track about building and integrating clinical ethics support into their healthcare systems. Whereas for Anne and I, we're sort of still trying to maintain getting traction and building awareness. And then I guess, creating trust, I suppose, so that we can play those sorts of roles in other various domains. But and we both have quite different structures for our service, because that sort of grassroots development is part I suppose, of how to really get traction and buy-in. But interestingly, over the years, we've actually morphed into those same three levels of consultation, even with our different models. So for hot case consultation, were pretty much the same. We have like that individual one to one, let's map the terrain help you with your thinking and off you go. Then there's sort of that medium level where usually it's a team based discussion, where you're sort of facilitating the team's MDT style iterations of the case and kind of helping them get more informally, I suppose to an outcome but being a resource as a part of that MDT. And then there's that sort of top third level where you're using more traditional, very structured, deliberative, clinical ethics approaches to help the team get to something else. So even though our models are quite different, actually, it's interesting to hear. We've all morphed into those sort of different types of consultations in that single individual case sort of setting despite the differences in structure.

Yeah, that is really interesting.

It's just important, I suppose, as Anne said, just to know that we don't have a mediation style model or a conflict resolution style model, obviously, the North American context, it's sort of morphed much more into that sort of role, we sort of see ourselves very much on the opposite end of that, it's, it's about facilitating, everybody's thinking around ethics related values based issues. And trying to do that in a sort of a supportive way, rather than having that explicit mediation role, where there's conflict about what's best. And we're quite different to that in the way we've set things up.

And I've thought about that quite deeply, because I am actually an accredited mediator. And so thinking about the American model of, you know, to Nancy Dubler who thinks of bioethics as mediation, or there's, there's a number of ways that that's pulled into our sort of way we work, but it's not, it's very different, as Linda says. So, mediation is about, you know, finding commonalities that similar, but then it's about a sort of a particular outcome. And, and, you know, and really sort of focusing on that that outcome, whereas I think the process is really important in what we do, and how we do it. So one of the really important things that I think comes out of clinical ethics consultation, is avoiding that groupthink that sometimes comes from just one discipline, or an MDT without a sort of wider veranda view of considering weighing values. And sometimes certain groups sort of adhere to certain values. But there may also be other underlying things like just authority in the room or, you know, some fundamental, you know, non financial conflicts of interest that we don't know about. But that might sit underlying a lot of the decision making and get conflated into things like best interests, or, you know, beneficence, but we don't sort of unless we unpack them, they don't really come out often in an MDT because you're focusing on a clinical question. And once you start thinking about ethical questions about what we should do, that stretches things wider and tries to, I suppose challenge thinking with the out there question, and tries to prevent the groupthink or the sort of anchoring into just one way of thinking.

Yeah, I like that, challenge thinking with the out there question. It's a real quotable quote (laughs). I wanted to take a minute to ask you about what your clinical ethics practice looks like, at the level of researching issues, because you both mentioned research, and I'm very curious about whether or not you're seeing any real kind of hot button issues in your clinical practice. Or if there are any issues that you're actively engaged in doing more sort of academic style research, or just even, you know, practice focused, but still delving deeper into certain kinds of issues.

You do get themes of things that are coming through the door, and that can sometimes guide you to going a bit deeper in an academic way into that space. So I know for our district, this, this, maybe three or four main ones, over the last couple of years, we've been doing quite a lot of research into organ donation, particularly in organ donation after DCD. And there's a number of papers that have come through an affiliated group at SHE that have been published over the last few years, coming from George crosskeys work as the lead on that project. He's one of our clinical ethics consultants in district. So organ donation has been a big issue for us. The other sort of interesting spaces, I suppose, obviously, in the context of COVID, there's been a lot of thinking around duties and obligations of healthcare professionals. So that's been sort of a recent piece of work that I've done with one of our mental health field liaison CNCs who sits on ethics committee, and that's a sort of work that's published about six months ago. We've also recently done a lot of work as an organisation or ethics project around high cost drugs and individual patient use applications. Sort of recognising that the the healthcare organisation and all the structures of the QUMC or the Drug and Therapeutics Committee deliberations is a bit ad hoc. And there wasn't consistency and transparency in process as to how those sorts of deliberations are made. And so we sort of went deep into that and built a decision-making matrix if you like, so that DTCs can use consistent processes, incorporating all the relevant pieces underneath to analyse and think through the implications of saying yes or no to a particular individual patient use application. And so that's sort of a bit of academic work that of recent sort of years, we've been sort of delving into. The other big ticket item for us in the future, actually, number one, we were constantly grappling with the issue of service evaluation in clinical ethics, and there's a huge literature out there demonstrating those issues, which I won't reiterate here. But as a service, we've been trying different ways of doing that, including very recently, a qualitative study in one of our institutions for I guess trying to understand from the clinicians who use the service, what it is they thought they got out of that and how valuable it was. And it's a paper coming out in the next couple of months relating to that. And finally, the other big ticket item for us over the next three years and sort of core in our strategic plan is, is really about clinical ethics supporting complex mental health, we get a lot of consultations in a complex mental health space, and it really is very, very difficult area. And often the usual clinical ethics approaches and tools aren't particularly helpful in that sort of setting. And there's a... there's, I think, a lot of work to be done mapping how clinical ethics can better support clinicians who are navigating that complexity. So I'd like to do that work over the next year or two, with a couple of other interested clinicians and one of the academics from SHE. And so that's sort of our research interests at the moment. Anne I'll hand over to you for that.

Thanks, Linda. Yeah, so um, we've had three, I suppose major interests over the last two to three years. The first one was with health care professionals and families and conflict between both. So anecdotally, and sort of reported over the world really globally, there's been an increase in aggression and even abuse within healthcare settings, paediatric healthcare settings, because of the triad in decision making, you know, even more complex in that space. So that element of behavioural aggression has been particularly challenging in the context of family centred care. So what we've done, we've done some work on sort of thinking about that, how we identify behaviours, given that families are often grief stricken, and, and anxious, you know, in a new environment, and then tried to categorise those and and research with a lot of focus groups and tried to develop a tool based on some work done by RCH (Royal Children's Hospital) Melbourne, to really help support families through the pathway and to try and set reasonable boundaries for behaviours that are proportionate. And so that work has been, was supported by the CEC last year, the Clinical Excellence Commission through the leadership programme. And so I completed that project in sort of the beginning of 2021. But it's ongoing, because it's now trialling in four wards across the network, the tool, which is a graded response, rather than a zero tolerance approach, which I argue is very reactionary. So I've tried to take it back upstream and try and identify behaviours early so that staff can support families, manage expectations, identify anticipated grief reactions, early signs, like hyper vigilance, which are quite well documented in the literature, and then try and prevent that sort of escalation to reactive violence. So that's been an ongoing project and is at the moment in a little bit of hiatus, just, you know, resources are always our challenge. So measuring and educating and getting the quantitative part to that out has been challenging. So I've sort of had a had a pause with that, although it's now being looking like it's going to be simed, for the learning dot kids, which will be sort of a tool that will go out on learning dot kids to help people understand the matrix itself. And the second part that I've been involved in is really more a collaborative project regarding sort of scoping, restraint practices in paediatrics, this is this has been a really, woolly area. Often children are held for you know, venipuncture or just normal procedures, sometimes by parents, sometimes by staff. That's not necessarily discussed as restraint, but people don't really understand the definition levels of definitions of restraint truly, and the clarity around that. And this is how this gets reported in terms of our KPIs for children's hospitals in terms of restraint. And yet the clarity is not around what that means in terms of you know, seclusion, physical restraint and chemical restraint. It's very blurry. And so although there are some parameters and policies and guidelines, it's still not really clear. So one of the projects that's happening I hope this year is we've put in FARC funding, with three paediatric centres Queensland, Melbourne and us to scope the practice of restraining paediatrics and to see really what are what's actually happening. So we can sort of start to balance that and think about it in terms of ethical considerations and principles. So that's the work that's being done there. And then on third level, we've started a project this year for our Medications and Therapeutics Committee, which is a network wide one. So that's for drugs, over $15,000 per year, your patient uses, as Linda mentioned, is a particular issue, because the costs for lifelong provision of those drugs for families and children is incredibly expensive. So often, they're based on compassionate use, children have no other options. And so individual patient use considerations are very difficult to make decisions about in sort of one meeting, when there's you know, there can be a lot of IPUs coming in. So one of the things we're doing, again, is building on a whole lot of work, and then actually trying to make a sort of more a decision pathway tool that's very sort of accessible to try and help clinicians and the members of the committee, so we've actually done a qualitative survey to sort of start kick that off to involve members of the committee, and then we're actually developing that, to bring a whole... there's still a whole lot of work into a fairly simple... well relatively simple tool, which is going to be challenging, I think. But that's, that's where we're at with that the decision making tool, like a pathway.

Well, it's, there are so many very complex and very interesting topics that you're both working on. And I would love to hear more about them. So we'll have to have you back on to the podcast at some point to talk about these projects. Just quickly, before we wrap up, I was wondering if either of you, or maybe each of you would have any advice for a person who is interested in getting into clinical ethics.

Yes, I mean, I think, you know, find, you know, find groups that are interested, find connections, you know, often, you know, people like ethics centres, they have groups that you can actually join in with. Our... we have a clinical ethics discussion group, every month at both hospitals. If you're in health already, then you can join that. If you're out of health, that's not so possible. But I would say, you know, connect with like-minded people, find, you know, if you're already in health, then there's lots of ways you can join in interest groups, come to forums, connect with places like Sydney Health Ethics, people are always really willing to sort of talk about ethics and to bring you in into those groups. And then I think it's really helpful if you think about what sort of background and training you would like to follow, because I think that the good thing about ethics is that it does bring very multidisciplinary group, transdisciplinary group into the space and I think that's a real value. It's not, it's not all doctors, it's not all, you know, one discipline, you know, it's not all philosophers. So that bringing that together as a really important part... I, my background is as a neuromuscular physio, specialty in feed paediatrics in neonates, but... in first contact, but, you know, I came into that space thinking about really, you know, what more can we do in health? You know, how can we make these decisions about capabilities really, when, you know, people are being sent home with sort of unable to walk or unable to sort of flourish in terms of that. So finding the language for ethics was really important for me. So I would say follow that and, and then it'll, it'll lead you places maybe to a Master's of Bioethics, and many universities doing that now. And also other courses that can take you further into your follow your interests, philosophy, and, you know, all sorts of like that.

Linda

I guess I just say that is not really nice, clear pathways in the Australasian context. I mean, I sort of took time out of my clinical training, and went over to Canada and did a fellowship in clinical and organisational ethics with the Joint Centre for Bioethics in Toronto. Because there was absolutely nothing happening here to actually really, for people who wanted to engage in this space to skill up. I think that is changing as Anne said. There are now tertiary level, you know, training programmes, if you like Masters- mainly academic, Masters and PhD style, academic training, but can I guess, get you to that next space in order to delve in to the clinical ethics kind of domain, but it's not an an easy space to get into, if you like. And part of, you know, the big challenge for Anne and I over the last four years or so is really about trying to build a community of practice that's recognisable and engages with all the rights that pieces including at the university level, so that people who are interested have an open door space to walk into. So that they can, you know, unpack their interest and talk to people who are working in this space and explore, you know, not unusual opportunities that might get them into the area that they want to be in. So I mean before COVID, kind of shut everything down, you know, Anne and I were running with our other colleagues in clinical ethics for having sort of a weekly clinical ethics salon at Sydney Health Ethics. And it was conceived as that sort of forum where people could come to or be referred to, if they expressed an interest in any of the other academics or healthcare professionals, that we could say, yep, come and speak to this little community on this day, every, you know, second week at Sydney Health Ethics. That's kind of fallen by the wayside a little bit in the context of COVID. But we have a virtual community of practice. And we're very happy to hear from anyone who's interested in getting involved in clinical ethics in their various domains. And Anne and I are both I'm sure constantly fielding questions about that, and sort of directing people to different areas that align with their interests. But it is not, it's kind of a self forward navigation still, at this point with sort of scooping out the champions and finding people who think this work is worthwhile, and then, you know, then building your own little nation that... in that area. I will say that both Anne and I in our services have set up fellowships, that people who are interested in clinical ethics, Anne's fellowship is a is a paid fellowship for healthcare professionals and doctors in particular, ours is just an an open academic fellowship, if you like, unpaid, unfortunately, for people who want to do it as part of the, you know, Master's work placement, or just because they're interested to see what it all looks like. And they come from a different academic background. So there are opportunities being fostered, I think, in different domains. So as I said, we very welcome to hear from anybody who's interested in getting involved and helping them sort through what their options are in their particular domain.

Awesome. So thank you so much to both of you for joining me, this was the beginning of a really great conversation, and I hope to have each of you back on and other members of our clinical ethics team as well.

Thanks so much for having us Kate.

Oh, no problem.

Yes, we enjoy enjoyed it.

It's really a pleasure. Thanks, everyone for listening to this episode of SHE Research Podcast. You can find the links that we've just discussed in this episode's show notes along with a full transcript of our discussion. SHE Pod is hosted by Kathryn MacKay and produced by Madeline Goldberger. You can find our other episodes on Spotify, Radio Public, Anchor or wherever you get your podcasts of quality. Thanks again for listening. Bye.