Alan: Hello everyone and welcome to In-Limbo Conversations! Today, we have with us Dr. Alexis Paton. She is a bioethicist and a medical sociologist. She is also a lecturer in social epidemiology and the sociology of health at Aston university in Birmingham. She is also the Chair of the Committee on Ethical Issues in Medicine at the Royal College of Physicians and a trustee of the Institute of Medical Ethics. So, thank you very much for joining us today Dr Paton and thank you very much for talking to us!
There aren't many voices out there that are talking about the importance of ethics and the social sciences in our response to the pandemic and if there are, then they're not as vocal or they're not heard as much but you and your colleagues have been doing a lot of work to sort of highlight that end of it- so, we're hoping that we can talk about that and that this helps others see this particular perspective of dealing with a pandemic that they may not have previously considered. I'd like to begin by touching some points in your essay "Fairness, ethnicity and Covid-19 ethics".
In that, you highlight how the existing guidance inadvertently discriminates against people from ethnic minority backgrounds and so, before we talk about that- could you just explain to us what ethical guidance is, why it's important and how does it work out in real life situations?
Alexis: Ethic guidance is incredibly important for a lot of those everyday scenarios where we're going to be coming up against dilemmas or problems and in particular, I think, guidance can be seen in almost every field and it comes in many different forms and many people will recognize their kind of day-to-day ethics coming from some kind of sort of moral or religious background that they may have that helps them, guides them make decisions and then, when we move ethics guidance into something like a professional field such as medicine, then that really helps us work out those very tricky scenarios where we may have competing interests for a patient or in the pandemic, where we may be finding ourselves in a situation of difficulty providing resources or staff or care, then ethics guidance is really an important tool that we can use to figure out- 'Okay, what is the best way forward here?' and I think it's important to remember that one of the things that people can sometimes find frustrating with ethical guidance is that it won't always give you the same answer and this is because the guidance is being used in a particular context at a particular time and so, it may give you one best way forward in a particular set of circumstances and then, a new best way forward in the different set of circumstances. Here in Britain, it's been very interesting- we've been really taking this kind of follow-the-science roadmap approach to the pandemic. Ethics is really, if you want to think about it, in that roadmap analogy- ethics is really like the cartographer, so it can show us the right road to take in this roadmap so to speak and it really helps us determine not just what we can do, but what we should do.
...ethics is really like the cartographer, so it can show us the right road to take in this roadmap so to speak and it really helps us determine not just what we can do, but what we should do....
Alan: To take your point about how they've been following science especially in the U.K. and if I can quote from an article of yours, recently from The Independent, where you say that this particular attitude perpetuates a myth about science, that is somehow morally neutral, it's objective, that illuminates only one way forward to deal with the particular problem- this is also kind of the main point of that essay that I quoted earlier, where you're trying to say that the relationship between fairness and equity in health care is not the same- even though it seems like we're being fair but it doesn't mean we're being equal, which is a little counterintuitive. Could you tell us how that sort of plays out? Why is it that being fair is not always being equal, especially when it comes to minorities?
Alexis: I think a lot of it comes with the fact that fairness, equality, and equity are all slightly different things. I can only mostly talk about the U.K. medical context because that's what I know best but in particular, here in the U.K, we have a real problem between equality and equity in health care. While everyone theoretically has equal access to the NHS for example, the equity of services, the availability of services to different people throughout the country is not the same- so it's actually not equal and as a result, we have an inequity and that's why I really wanted to pick up this idea of fairness- because fairness assumes that we are all coming at the pandemic, to use that example, from an equal footing and we are not. You know it's amazing how much has moved on since I wrote that particular essay so- I wrote that in April and now we're sitting here in October and we know so much more- and in a way, I think, this makes my essay stronger. We know, for example, that if you live in an area of deprivation or you live in deprivation, you're much more likely to have a poor outcome from covid-19 than if you are coming from a more privileged background and that's just talking about finances as an example, but also there's a problem in equity, in terms of the kind of health that you have, as we enter the pandemic and in our country, at least in the U.K., there are some real problems. There's some huge health inequalities- so there are unequal health for different segments of the population and also, there is a lot of health inequity- so the populations that are most likely to be unhealthy are also the populations that have the least likely ability to access the healthcare services that they need- so it's a real double whammy as we come into the the pandemic. If we take fairness as our footing to write any of the ethical guidance on the pandemic, without considering the fact that people are not coming into the pandemic on an equal footing, then we are already disadvantaging huge groups of the population.
...If we take fairness as our footing to write any of the ethical guidance on the pandemic, without considering the fact that people are not coming into the pandemic on an equal footing, then we are already disadvantaging huge groups of the population. So, we're disadvantaging anyone who lives or works in deprivation, but we're also disadvantaging a number of the ethnic minority population in our group as well....
So, we're disadvantaging anyone who lives or works in deprivation, but we're also disadvantaging a number of the ethnic minority population in our group as well, which in the U.K, who are coming from a very unequal point where they often are also living in deprivation or in low socioeconomic conditions and then, also have a propensity towards some of the nastier underlying conditions that we know make for poor Covid outcomes- for example, any kind of cardiac underlying condition has been shown to have a poor outcome in covid and in the UK, three of our major ethnic minorities- so the South Asian population, the African population and the Black Caribbean population all tend to have a tendency towards these cardiac underlying conditions as well. So as you see, I build up the different layers of inequity or inequality there. You can see how if you're a privileged white person, then you're already walking into the pandemic at a distinct advantage and then, if we make guidelines that don't consider these differences, then it further privileges a particular group in the population to have better outcomes and to serve and better survival rates in the pandemic.
Alan: So, do you feel that social sciences is what helps us make these ethical guidelines, or how does social sciences play a role with helping us form these guidelines keep this in mind?
Alexis: come from the social sciences in doing empirical work, so I like to go out and talk to people, observe people in the field, to see how it is that we do things, where the problems lie and I think that that kind of work is incredibly important when we make guidelines for two reasons. So, first I'm going to talk about guidelines in general and then I'm going to talk specifically about ethical guidance.
With guidelines in general- in medicine, if guidelines are written without reference to the context in which they will sort of be carried out, that they tend to miss very important practical, day-to-day things that happen- in a ward for example. That means that certain aspects of the guidelines simply cannot be carried out. And so, this is one of those dangers of writing in a vacuum, if you sit back and think "Oh well, you know, these steps make sense..we should do them." But if you don't realize that, in order to get from, for example, step one to step two- you require extra members or staff. Or you need to be able to transfer from a ward on a level plane, so there's no stairs for example, then what you find is you can never get to step two and so three four and five don't happen either. So social science is a really great way of showing the context, the contextual factors in which guidance will be carried out. And I think it's very important for all guidance and in particular, any kind of clinical guidance that they be trialed in-situ so that we can do this type of work, we can observe how to guide- where the guidance, where the sticking points are for the guidance and how it is that we can help the guidance evolve so that it accounts for these issues.
And then in ethical guidance, we have a further issue. So, ethics does have a bit of a tension in it - there's a raging, continually raging debate between a more philosophical, theoretically based ethics and an empirical ethics. So I obviously- I'll put my hand up- I fall on the empirical side of things. And I am even more strange because I fall on the "We-can-do-ethics-with-sociology" side of things, so I'm a bit of a rare bird, but though there's a growing flock of us, what's interesting about ethics guidance is that, in particular with things like fairness, it's important to remember that a number of the principles that we use in medical ethics (today) are derived from philosophy that are several hundred years old, and have not and could not have conceived of the medical scenarios that we now use these principles in.
...what's interesting about ethics guidance is that, in particular with things like fairness, it's important to remember that a number of the principles that we use in medical ethics (today) are derived from philosophy that are several hundred years old, and have not and could not have conceived of the medical scenarios that we now use these principles in...
And so in that way, looking back on what I was talking about- how clinical guidance needs to be developed in context, we can imagine how much more removed ethical guidance is when it chooses to prioritize some of these- I don't want to say older principles, because that's not right, but principles that were developed long further in our history. And it's very important for ethical guidance in medicine to be practical and to speak to the practical profession in which it will be used. So again, social science is a really great place to do that, and in the guidance that we were developing for the Royal College of Physicians, there's loads of social science research that had been done that was incredibly helpful. So for example, one of the raging debates in our UK media, was about whether doctors should be heroes that lay down their lives for their patients. There was a huge debate about this- by saying that they were our superheroes, we were implying that we expected them to lay down their lives for us and others. Well, go back a few years to previous pandemics and work out of Canada had actually found that in SARS and in the H1N1 pandemics that came previously, the public had no expectation that doctors should do this. So they did some interviews and focus groups and observed some town hall events where they asked the public this question, and it was fairly unanimous that they had no expectation the doctors should die for their patients. So, while we're raging these debates in the media and there's discussions about whether "duty of care" - which is a medical ethics concept - should encompass dying for their patients. Actually, what we did is, if you went and looked at the data on what people really thought about this, it was that they thought “No, absolutely not. Doctors should not die for their patients.” So that's just a small example of how social science can be incredibly helpful in how we craft guidance, because if we don't go and we don't refer to that kind of work that's out there, then we can end up creating guidance that is unfair to doctors as an example but also doesn't capture the sort of normativity that the public has around this- the morality that they think is attached to it. And so you end up with guidance that is disconnected from the context that's going to be used and the people who need to use it.
Alan: So it's not only important to use social sciences but it's also, at least from your perspective, to focus on the empirical, the present day thing more than the theoretical. Because, there's always within social science and it's always a schism between empirical approaches and the theoretical thing, so I do feel there's a lot of that- so, you'd fall more to the side of the empirical because it's more important to do the present day scenarios I guess, to focus on what is now.
Alexis: For me, it's that we can use the empirical to inform the theoretical. They don't have to be divorced at all. And the theories that exist are great ones to start with, and some of them don't need to be changed. But what we need to do is have a kind of continual process where we check back in, on how the theories are being used in practice, how they're operationalized in policy, how they're taught in medical schools and how they're perceived by the staff and the public who need to use them.
...For me, it's that we can use the empirical to inform the theoretical. They don't have to be divorced at all. And the theories that exist are great ones to start with, and some of them don't need to be changed. But what we need to do is have a kind of continual process where we check back in, on how the theories are being used in practice, how they're operationalized in policy, how they're taught in medical schools and how they're perceived by the staff and the public who need to use them...
And then be open to the fact that sometimes we're getting it wrong and we need to change and we need to adapt. And you know, there was a big move, for example, when patient autonomy became a very paramount bioethical principle - this move from paternalism was a huge step forward, and really only happened in the 20th century. I think sometimes people forget this is a latter half of the 20th century move that happened in medicine. And then we see in the late 20th century moving into the 21st century, a move towards what's called "shared decision making" as another example, and this came out of empirical work around how patients wanted to be making decisions with doctors. And it's now become something that we use a lot in the NHS - you know there's whole web pages about how this is important- theory and concept that you must use in your practice in the NHS. But what's interesting is that now, there's new empirical work saying that we may not be getting it totally, right? When we think we're doing shared decision making, but we haven't quite got there for a number of reasons- a lot to do with lingering power dynamics between patients and doctors, a huge amount to do with how little time our doctors here in the UK have to spend with patients- six to seven minutes is not a lot of time to build trust and develop a relationship with someone, to make a shared decision. And so now, I think that's an example where we've been using particular theory and then, we've also been slowly refining it with empirical practice and I think now, we're at a new point where we have to have another think about whether what we call shared decision making right now, perhaps that theory needs to be refined again based on how it's being used in practice.
Alan: That's pretty interesting! If I can move from the sort of academic, professional space to a more public space-
Alan: One of the things you've highlighted recently in your works is how the government has been resistant to considering these things, especially with regards to ethnic minority- Why do you think that is? Is there any particular reason why they are resistant?
Alexis: I try not to be cynical, try to be helpful- I think partially it's because- mitigating a lot of these factors - you know, dealing with health inequalities, dealing with the inequities that people from ethnic minority backgrounds have to deal with in their health and their whole lives is a costly endeavor, and at least in the UK- we are with a government that favors austerity over everything else. And you know, to mitigate health inequalities we need to improve things like housing and urban landscapes. We need to improve public transport. We need to improve food quality and food provision, you know. The list kind of goes on and on and all of those things are important things that I believe we need to do. But the government just sees those, I think, as pound signs that they have to pay out for. So, I don't know if it's the UK government as a whole, forever, that is resistant to this, or if it's this particular government that we have- as I said has been favoring austerity for a very long time now.
Alan: I understand that the question I asked you and the one I'm about to ask don't really have any particular answers but since you are somebody who's working very closely with all of these things, I'd just like to get your thoughts on this.
Like you mentioned - the government has this certain attitude, could be a product of the present times and all of those. There's also the popular perception of the pandemic, or how people, in general, deal with it or think about it. Like you mentioned, your article was in April and around that time, when I was doing a bit of research, I found that a lot of news reports and articles in May, April, May, June where they highlighted this- ethnicity, the relationship between COVID and ethnicity in the UK, and where they talk a lot about- sometimes there's a bit of racism. They bring in a bit of talk about how this might be implicitly racist, or systemic racism and there seems to be a different way that people deal with this. So for example if I was to say, in popular media - at least on social media - you'll see a lot of people talking about Vitamin D. That's a popular narrative about how COVID goes- "Oh, you know. I think minorities don't have the required Vitamin D and that's that's why they are more- it's not systemic racism. It's not systemic problems, it's just that- it's a simple matter of not having enough Vitamin D and all of those things.” So, as somebody who makes these guidelines or somebody who works in these things- how does this factor into your- how do you sort of make sense of people's attitudes?
Alexis: This is not the first time someone's asking that question, and it's something that I've been thinking about a lot. So, yeah. We've had a huge amount of coverage here in the UK about how it could just be biology, or worse - some of it's like "Oh it's just the culture of this group" So, for example, when we had our Leicester lockdown- we've got a really big ethnic minority background- a big South Asian background in Leicester. And people were saying, "Oh it's just their culture to mix." And for me, I find that very frustrating, because it shows that in the popular perception, there's very little understanding of what social and health inequalities look like and how systemic racism feeds into those. So it's undeniable that some groups are more susceptible to particular underlying conditions than others. That's something that happens across all ethnic backgrounds. But one of the things that I thought was really interesting is that, when we consider how, for example, people from a South Asian background are often more susceptible to heart conditions - we've done research. There has been research that's been done, that's looked at- if you look at a group that are South Asian and living in lower economic status and higher levels of deprivation, then those underlying conditions increase. And if they are able to be living in a more privileged financial background, then those underlying conditions and the likelihood of having a cardiac problem decreases. So, what we know is that you can't just say it's biology. You have to take into account what these inequities are doing. And in the UK, and across the world, we have to recognize that a lot of these inequities start with systemic racism. That's where they start. So in the UK, we're having a group of people who were originally immigrating from different countries. A number of them have been here for generations now, but when they were first coming, there was a level of racism that limited the potential that was available to them. There are whole stories about generations of families that start in one particular job because that's the only thing they could be hired to do - something that, when we look in 2020 back, then "Oh my god that's insane! That's just appalling that anyone would do that!" This systemic racism is what feeds into people's abilities to get the education that they want or need, work in the job that they would like, have the stability that they need for the houses that they would like to live in and all of those things are wrapped up in how healthy we are.
There are whole stories about generations of families that start in one particular job because that's the only thing they could be hired to do - something that, when we look in 2020 back, then "Oh my god that's insane! That's just appalling that anyone would do that!" This systemic racism is what feeds into people's abilities to get the education that they want or need, work in the job that they would like, have the stability that they need for the houses that they would like to live in and all of those things are wrapped up in how healthy we are.
Alan: So it's very interesting and I think it's a very complicated thing to navigate as well. Does it sort of seep into the professional space as well? Or is it like something that's sort of relegated to a public consciousness? Do any of these things find their way into professional or governmental space?
Alexis : I think it cuts across all bits of society, you know and I'm sure that my colleagues from, I think minority backgrounds would have a number of appalling stories to tell you about the systemic racism that is in academia. I've definitely witnessed some pretty bad incidents in medicine, so I think that is still very alive and well. We need to be aware of that. One of the interesting things that we tried to pick up on when we were putting the guidance together for the pandemic and also I gave some evidence to Parliament about the impact of Covid on ethnic minority backgrounds as well is that doctors from ethnic minority backgrounds are much less likely to speak up if there's a safety concern because they have experienced that the repercussions on them are significantly worse than on their white counterparts and so- I got quite worried and I'm still quite worried that we're in a scenario where we may run out of PPE, as an example- that we have over well somewhere around 50, probably more if we consider health care assistance importers and things like that- about half of our health care staff are from an ethnic minority background, here in the NHS- so we're talking about a group that are on the front line in the pandemic who are known to have worse outcomes from Covid than the white population. We are looking at a possible PPE, vaccine and drug shortage in the UK and we have a group who feel less comfortable speaking up about safety concerns because of repercussions to themselves that if they were a white doctor or white nurse or a white healthcare assistant, they wouldn't feel that same pressure. To me, that's just a perfect storm and shows how that's all about systemic racism, that has nothing to do with where they've come from you know- their biology, anything like that- that is about systematic racism and how that is still very alive and well in our society.
Alan: I think I have just one last question- are there any cases other than the present Covid case where social sciences or certain guidelines, insights from social sciences..have really helped fight certain pandemics or certain problems or where if they had been considered, they might have helped a lot more- is there like a positive and negative level?
Alexis: Canada is a really great place to start so- it's also my native country- I'm not biased though I promise and in the SARS, the original SARS pandemic, the work that came out of Canada and the guidelines that came out of Canada and the hospitals in some of the hot spots- they really did take into account the social sciences here and they were watching and talking and interviewing and in the pandemic guidance that exists- that does take into account the social sciences and they were rolled in from the beginning- so, a number of the papers that come came out of that group showed that from the very start, the social science was there- trying and contributing to the work that was done there and and a lot of the work that they did afterwards to see whether the guidance was the appropriate guidance and fit with what was needed. This is a really important resource for those of us working in this pandemic now because it shows us what worked and what didn't and I think that's very important so that we're able to improve and refine as we move forward in this pandemic and likely in more pandemics in our lifetime as well ,in terms of where social science could be better used. I think there's a few places- I think social science could be better utilized in the way we do medical ethics education and the guidance that we have around what it is that doctors need to learn for that. I think social science would provide us a significant amount of context for that and in general, I would say that you need a social scientist every time you write policy- you need to be able to look at the context in which that policy will be used because if you don't, you are setting that policy up for failure.
I think social science could be better utilized in the way we do medical ethics education and the guidance that we have around what it is that doctors need to learn for that. I think social science would provide us a significant amount of context for that and in general, I would say that you need a social scientist every time you write policy- you need to be able to look at the context in which that policy will be used because if you don't, you are setting that policy up for failure.
Alan: Thank you! Thank you very much for sharing the insights with us- hopefully it helps people see another aspect of battling this pandemic and other social scientists also to see the importance of it. Thank you very much for talking to us.
Alexis: Yes! It was a pleasure! Thank you very much!