Welcome to Science with Sanjula, where we talk about anything global health.
My name is Sanjula Singh and I am a researcher at the University of Oxford.
Join me as I speak to world leading scientists who tackle today's biggest challenges in health care.
My guest today is Dr. Mehrunisha Suleman, the director of medical ethics and law education at the University of Oxford.
She specialises in racism, prejudice and ethics within health care.
Please let me welcome Dr. Mehrunisha Suleman.
Sanjula, thank you so much. It's wonderful to be with you today. Thank you very much.
I would like to start by getting to know what drove you to become an expert on health ethics.
It's a really important question, and it really takes me back to being a student in Oxford in medical school.
And when we did a lot of our clinical practice, what we often relied on is scientific knowledge and understanding.
But what became very clear to many of us who were students was that medicine not only relies on that scientific knowledge,
but also a very deep understanding of the sorts of values that are critically important.
So when we are faced with ten people with equal need for health care and we can only be providing health care to one of those,
how do we decide? The reality of rationing resources
Made it very apparent to me that the underlying values in the way in which we deliberate these sorts of questions is very, very important.
So could you tell me, what is your definition of ethics?
My understanding is that ethics is about how how we ought to live.
What makes the decisions that we make right and what makes other decisions wrong.
But also, ethics is concerned about what our goals should be.
What is it that we're seeking from this life?
Is it about living a good life? Is it about a life that's worth living?
And the pursuit to answer these sorts of questions, Sanjula,
has predominated, you know, the human story since the time of of the ancients from Socrates,
Aristotle and Plato to also the major world religions, you know, teachings and sayings of Jesus, Buddha and Mohammed.
And that we are having this conversation today really does emphasise that these questions are still incredibly relevant, incredibly important.
What were the beginnings of clinical ethics?
In terms of clinical ethics, this takes us to a really harrowing part of our recent history.
During Nazi Germany, the sorts of experiments that were conducted on human participants without their permission,
on people with diseases, again, without any respect for their dignity and their freedoms.
And what emerged from Nazi Germany was this collective commitment from the
World Medical Association and subsequently lots of different governing bodies,
which is why we've arrived at an understanding of clinical ethics today,
where autonomy and respect for people's bodily integrity and their freedoms is paramount.
I know that you are an expert on the ethical challenges regarding end of life decisions,
in particular in facing minority ethnic and faith communities.
Could you give me an example, please, of an ethical challenge you have personally encountered regarding an end of life decision?
One particular patient, an elderly female patient who had terminal cancer.
In this case, it was deeply challenging because the patient was at home surrounded by her loved ones.
And many people of Muslim faith believe that paradise lies at the feet of their mother.
And so caring for their mum is not an obligation but an honour.
It's something that only the chosen few get to fulfil.
And this meant that the notion of handing over care was deeply, deeply, emotionally and morally troubling for them.
Once the health care staff became aware of this, it led to, you know,
a watershed moment where immediatelythey tried to involve the family more closely
in the care and to understand what it is that they would like to be involved in.
I would like to move on and talk to you about race and racism in health care. In a conversation is as important and sensitive as this,
sometimes finding the correct words or the most appropriate terminology is quite a struggle in itself.
So do you think that there is a best way, or if there are best words to use when talking about prejudice and ethnic minority groups?
I think a really good example of how we can work through this is a recent report that has been published by the Race and Health Observatory.
How it is that people who identify as minority ethnic communities would would want to
be referred to. There is growing unanimity that words like BAME ought not to be used.
And this notion that a group of diverse people with different cultures, heritages and languages can be defined through
one phrase or one terminology is incredibly reductive and disrespectful.
And how would you define racism? It's prejudice that is on on the basis of somebody's race or perceived race.
And could you provide us with practical examples about racism in health care?
What's important to acknowledge is this is a really critical area of research and an emerging area of research.
So we don't have masses of data, but what we do have are studies that have focussed in on the impact of, for example,
unconscious bias. Work done in the U.S. where people with the same diagnosis of different
races received different pain medication because of the perceptions of health care staff.
Also, the variation in perinatal outcomes are incredibly stark.
When we look at the data based on different different racial or ethnic groups.
An example that I can share with you.
I've had colleagues who've encountered situations where they have been trying to look after an acutely ill child,
and because of their racial background, they've been turned away by parents wanting a doctor of a specific ethnic group to look after their child.
And in response to cases like this, what we did was write a paper as well as put together some guidance on how it is not just clinical teams,
but organisations ought to respond to challenges like this.
If I may ask so, have you ever experienced racism yourself in your personal life or your professional career? As a clinical student,
I was training very soon after the 9/11 attacks in New York, and as this is a podcast,
I can explain to the audience that I'm a visibly Muslim woman who wears a hijab and therefore can be identified as Muslim.
And I did encounter a situation with a patient where they were hesitant to be seen by me and to have me take their history,
because they were afraid. And it was it was deeply saddening.
I wasn't... I would say I wasn't personally offended,
I was saddened that global events that were conducted by a small group of people was
impacting my ability to have a relationship with and to care for this individual.
So that's an encounter that that I can remember. Another is when I was working as an expert with UNESCO
I had the opportunity to attend an expert meeting in Paris.
And it was the week after the Charlie Hebdo incident and the hotel in which I was staying,
as well as just walking on the street, I was made to feel visibly, you know, sort of appreciably unwelcome.
The hotel staff were unwilling to answer questions or provide directions.
And it was very, very difficult at the time.
And again, it was an action of a minority that was sadly impacting our ability to have any sort of rapport and meaningful conversation.
And do you remember how you responded at that time? It was deeply, deeply sad, and it was something that I carried with me for a very, very long time.
Interestingly, the next day I was in the same ward, on the same bay,
and our exchange must have been heard by the patient next to the original patient that I'd mentioned.
And the first thing he said was, It's wonderful to meet you.
You're more than welcome. And I knew that he was responding to what had happened the day before.
And it was incredibly heartening, you know, and for that to happen the day after was something that was very,
very uplifting and really informed my practice,
you know, that we are a very diverse human family and people are reacting to the sorts of challenges, beliefs and values that they hold.
And it's not something... So long as you are not responsible for that, it's not something that you should hold yourself accountable for.
The Paris encounter was a lot more challenging and I didn't deal with it very well in that I was silent,
I didn't respond and I simply walked away and managed to make ends meet for myself in the way that I could.
But I reflect now that if I were to return to that hotel,
I probably would want to sit down with the staff and ask them what it was like for them to encounter
somebody who is visibly Muslim and what that meant for them and for us to be able to have a more
open dialogue. I think that's very brave of you and also very beautiful of you to still want
to have such an open discussion because people have hurt you at that stage,
but you would always be willing to keep the conversation going, if I understand you correctly.
Oh, their position is also from a place of hurt.
And recognising that and respecting that, first and foremost is so important.
Thank you very much for sharing those two stories. Now it's time for the mini lecture.
Mehrunisha, please, could you tell us why it's so important to understand racism in health care?
I'll give you a minute. So whenever you're ready, please go ahead.
Understanding racism in health care is critically important for a number of reasons.
The first is that one of the core values of our health care system is that it ought to
be accessible to everyone and that access ought to lead to good outcomes for everyone.
That we are seeing disparities in terms of people's access to services on the basis of their race, as well as them suffering poor outcomes.
Because of their race is something deeply, deeply problematic that we need to spend more time researching and understanding.
The other really important issue is our health care workforce is one that comprises
of diverse people and a diverse workforce is a more successful workforce.
And we need to ensure that each level that diversity is is represented, that seniority isn't just in the hands of a few, but for everyone.
I often wonder, how can I be better and how can I learn and grow about this topic?
And I think one way to do so is by educating myself through reading books, listening to podcasts like this one.
What would you recommend being the best method of learning about racism in health care?
Books and podcasts. Absolute must. But what I would say in our society,
where people are heavily reliant on social media echo chambers that prevent them from benefiting from that human connection.
Being face to face with someone that they disagree with and that sort of environment
is critically important for us to be able to recognise and respect one another,
but also to understand that difference is critical for our society to grow and to develop.
As we said earlier, ethics transforms, and in order for us to flourish as a society,
we need to not only recognise but also respect that difference across political, ethnic and other divides.
Do you know of any other policies which may be even targeted at entire communities or countries to minimise racism in health care?
Are there any solutions, so to say? There's been growing investment in training for health care professionals to try and mitigate unconscious bias,
but also to address this issue of racism head on,
a few colleagues and I will be running a training session on addressing racism in health care
and what we are looking forward to is producing guidelines alongside the Royal College of Paediatrics,
and we're looking to other organisations like the General Medical Council to take the lead from the British Medical Association,
who recently produced guidance on this also. What have we learned about inequalities in the pandemic response during the COVID pandemic,
and what are ways to make future preparation more effective and more equitable?
Could you please provide us with examples of inequalities during the pandemic?
We knew from early on in the pandemic that there were certain groups who were more exposed to the virus and subsequently succumbed to worse outcomes.
People from the black community, particularly black men, were four times more likely to succumb to the virus than those of other ethnic groups.
And in terms of indirect impacts, as a result of lockdown and the sorts of consequences on people's jobs as well as their incomes,
what we found is that people from ethnic minority communities have been 30-40% times
more likely to encounter loss in their income compared to other communities.
And why do you think that is? The backdrop to the pandemic is very, very important.
We had prevailing inequalities in our society when it comes to health, education, people's financial position.
And what happened subsequently within the pandemic was that these inequalities were
further exacerbated because of the sorts of interventions that needed to be administered.
The UK has one of the lowest provisions of statutory sick pay.
People also weren't able to access isolation payments during the pandemic when they needed to,
and that meant that particularly people with low quality jobs,
precarious contracts who were self-employed, were incentivised to continue to go out to work.
And it meant that they were more at risk of being exposed.
And this was particularly true for people from it, from a low income, more deprived background.
Right. But then if if I'm hearing you correctly, you're actually saying we should try to decrease inequality in society first,
and then after that we would have a more equitable response.
But that's quite a challenge. Absolutely.
We have to think about it as a system wide issue, but also that health and opportunities for good health isn't limited to health systems.
It's not something that is afforded by access to good health care.
It's through good housing, education, regular income, good quality jobs that people are afforded opportunities for good health.
And just out of curiosity, like, what you just suggested
Is that something that's actually happening right now? We did some work engaging with the public.
And the public's view is incredibly important in order to drive political change.
And what we are learning is that the public are becoming more aware of these inequalities,
the sorts of numbers and the pictures of the people who are succumbing to the virus early on in the pandemic
and conversations about justice and fairness has become a lot more live in, you know, in our shared consciousness.
And that's a critically important juncture from which we can then enact the right sorts of policies and change.
So we always end the interview by asking what your personal advice would be as
well as your career advice for students and young professionals worldwide.
First of all, thank you so much, Sanjula, it's been wonderful speaking with you and in terms of my advice to current and would-be students.
Be brave and don't be afraid of asking questions that haven't been asked before.
My research journey has been defined by that, but also seek out mentors, people who can be allies with you and guides through that journey.
Conducting research and persisting can be incredibly isolating, incredibly difficult.
So do make sure that you rely on others and form a community for yourself and also establish that,
you know, in terms of your role in supporting other people.
And you'll often find that you're not the only one in the room who is clueless or who is who is frightened or afraid.
There will definitely be more people who are feeling the same as you.
Given the subject of today. I was wondering if you would also be willing to give advice to those young people who may experience prejudice or racism,
either in their personal life or in their professional career.
Is there any way you could assist them in how to reply to such injustice or what may be appropriate steps to take?
Prejudice, racism is incredibly difficult to experience and encounter.
The first thing to see is it's deeply,
deeply important to recognise within yourself that what you have experienced is an injustice and it's not something that is to do with you.
It is something that is sadly prevalent.
And do seek out advice.
There's lots of services that are available to students and peer support mechanisms.
And the other is, again, seek out people who you think are potential safe spaces.
I've certainly done that for myself through advice from senior colleagues who've said, you know,
let's not make our relationship just about work, but about care for one another and just sharing the day to day.
And that's often really, really helpful in making sure that you have that support in place, but that you can be support for others.
Well, that's beautifully set. Thank you so much, Mehrunisha, for your time today.
Join us for the next episode of Science with Sanjula where I'll be talking to Professor Keith Hawton about mental health.