1 00:00:05,910 --> 00:00:09,510 Welcome to Science with Sanjula, where we talk about anything global health. 2 00:00:10,140 --> 00:00:13,950 My name is Sanjula Singh and I am a researcher at the University of Oxford. 3 00:00:14,550 --> 00:00:19,650 Join me as I speak to world leading scientists who tackle today's biggest challenges in health care. 4 00:00:20,820 --> 00:00:27,840 My guest today is Dr. Mehrunisha Suleman, the director of medical ethics and law education at the University of Oxford. 5 00:00:28,380 --> 00:00:32,880 She specialises in racism, prejudice and ethics within health care. 6 00:00:33,630 --> 00:00:37,130 Please let me welcome Dr. Mehrunisha Suleman. 7 00:00:37,140 --> 00:00:41,070 Sanjula, thank you so much. It's wonderful to be with you today. Thank you very much. 8 00:00:41,520 --> 00:00:46,380 I would like to start by getting to know what drove you to become an expert on health ethics. 9 00:00:46,770 --> 00:00:55,160 It's a really important question, and it really takes me back to being a student in Oxford in medical school. 10 00:00:55,170 --> 00:01:05,160 And when we did a lot of our clinical practice, what we often relied on is scientific knowledge and understanding. 11 00:01:05,550 --> 00:01:13,050 But what became very clear to many of us who were students was that medicine not only relies on that scientific knowledge, 12 00:01:13,290 --> 00:01:18,990 but also a very deep understanding of the sorts of values that are critically important. 13 00:01:19,260 --> 00:01:27,390 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, 14 00:01:27,630 --> 00:01:31,470 how do we decide? The reality of rationing resources 15 00:01:32,190 --> 00:01:41,910 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. 16 00:01:42,090 --> 00:01:45,120 So could you tell me, what is your definition of ethics? 17 00:01:45,480 --> 00:01:51,160 My understanding is that ethics is about how how we ought to live. 18 00:01:51,870 --> 00:01:58,350 What makes the decisions that we make right and what makes other decisions wrong. 19 00:01:59,070 --> 00:02:04,020 But also, ethics is concerned about what our goals should be. 20 00:02:04,710 --> 00:02:07,800 What is it that we're seeking from this life? 21 00:02:08,820 --> 00:02:13,710 Is it about living a good life? Is it about a life that's worth living? 22 00:02:14,190 --> 00:02:16,890 And the pursuit to answer these sorts of questions, Sanjula, 23 00:02:16,920 --> 00:02:25,229 has predominated, you know, the human story since the time of of the ancients from Socrates, 24 00:02:25,230 --> 00:02:32,850 Aristotle and Plato to also the major world religions, you know, teachings and sayings of Jesus, Buddha and Mohammed. 25 00:02:33,210 --> 00:02:43,890 And that we are having this conversation today really does emphasise that these questions are still incredibly relevant, incredibly important. 26 00:02:44,160 --> 00:02:48,910 What were the beginnings of clinical ethics? 27 00:02:48,930 --> 00:02:55,650 In terms of clinical ethics, this takes us to a really harrowing part of our recent history. 28 00:02:56,520 --> 00:03:06,210 During Nazi Germany, the sorts of experiments that were conducted on human participants without their permission, 29 00:03:06,990 --> 00:03:15,360 on people with diseases, again, without any respect for their dignity and their freedoms. 30 00:03:15,780 --> 00:03:22,559 And what emerged from Nazi Germany was this collective commitment from the 31 00:03:22,560 --> 00:03:26,790 World Medical Association and subsequently lots of different governing bodies, 32 00:03:26,790 --> 00:03:32,939 which is why we've arrived at an understanding of clinical ethics today, 33 00:03:32,940 --> 00:03:38,790 where autonomy and respect for people's bodily integrity and their freedoms is paramount. 34 00:03:39,300 --> 00:03:43,800 I know that you are an expert on the ethical challenges regarding end of life decisions, 35 00:03:44,220 --> 00:03:47,700 in particular in facing minority ethnic and faith communities. 36 00:03:47,760 --> 00:03:57,450 Could you give me an example, please, of an ethical challenge you have personally encountered regarding an end of life decision? 37 00:03:58,710 --> 00:04:02,130 One particular patient, an elderly female patient who had terminal cancer. 38 00:04:02,770 --> 00:04:11,400 In this case, it was deeply challenging because the patient was at home surrounded by her loved ones. 39 00:04:11,880 --> 00:04:17,430 And many people of Muslim faith believe that paradise lies at the feet of their mother. 40 00:04:17,760 --> 00:04:23,160 And so caring for their mum is not an obligation but an honour. 41 00:04:23,340 --> 00:04:27,660 It's something that only the chosen few get to fulfil. 42 00:04:28,080 --> 00:04:38,700 And this meant that the notion of handing over care was deeply, deeply, emotionally and morally troubling for them. 43 00:04:38,730 --> 00:04:43,120 Once the health care staff became aware of this, it led to, you know, 44 00:04:43,170 --> 00:04:52,260 a watershed moment where immediatelythey tried to involve the family more closely 45 00:04:52,260 --> 00:04:58,080 in the care and to understand what it is that they would like to be involved in. 46 00:05:04,350 --> 00:05:11,820 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, 47 00:05:12,510 --> 00:05:18,210 sometimes finding the correct words or the most appropriate terminology is quite a struggle in itself. 48 00:05:18,870 --> 00:05:27,360 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? 49 00:05:27,720 --> 00:05:38,850 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. 50 00:05:39,750 --> 00:05:45,959 How it is that people who identify as minority ethnic communities would would want to 51 00:05:45,960 --> 00:05:53,820 be referred to. There is growing unanimity that words like BAME ought not to be used. 52 00:05:53,820 --> 00:06:05,610 And this notion that a group of diverse people with different cultures, heritages and languages can be defined through 53 00:06:05,910 --> 00:06:10,290 one phrase or one terminology is incredibly reductive and disrespectful. 54 00:06:10,950 --> 00:06:21,360 And how would you define racism? It's prejudice that is on on the basis of somebody's race or perceived race. 55 00:06:21,660 --> 00:06:26,250 And could you provide us with practical examples about racism in health care? 56 00:06:26,700 --> 00:06:34,920 What's important to acknowledge is this is a really critical area of research and an emerging area of research. 57 00:06:35,490 --> 00:06:45,330 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, 58 00:06:45,330 --> 00:06:53,040 unconscious bias. Work done in the U.S. where people with the same diagnosis of different 59 00:06:53,040 --> 00:07:00,240 races received different pain medication because of the perceptions of health care staff. 60 00:07:00,600 --> 00:07:07,800 Also, the variation in perinatal outcomes are incredibly stark. 61 00:07:08,400 --> 00:07:15,090 When we look at the data based on different different racial or ethnic groups. 62 00:07:15,570 --> 00:07:17,520 An example that I can share with you. 63 00:07:17,790 --> 00:07:25,560 I've had colleagues who've encountered situations where they have been trying to look after an acutely ill child, 64 00:07:25,920 --> 00:07:38,820 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. 65 00:07:40,110 --> 00:07:55,469 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, 66 00:07:55,470 --> 00:08:00,310 but organisations ought to respond to challenges like this. 67 00:08:01,140 --> 00:08:09,630 If I may ask so, have you ever experienced racism yourself in your personal life or your professional career? As a clinical student, 68 00:08:09,930 --> 00:08:20,940 I was training very soon after the 9/11 attacks in New York, and as this is a podcast, 69 00:08:20,940 --> 00:08:30,510 I can explain to the audience that I'm a visibly Muslim woman who wears a hijab and therefore can be identified as Muslim. 70 00:08:31,080 --> 00:08:46,320 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, 71 00:08:47,100 --> 00:08:53,670 because they were afraid. And it was it was deeply saddening. 72 00:08:54,120 --> 00:08:58,079 I wasn't... I would say I wasn't personally offended, 73 00:08:58,080 --> 00:09:10,080 I was saddened that global events that were conducted by a small group of people was 74 00:09:10,080 --> 00:09:18,390 impacting my ability to have a relationship with and to care for this individual. 75 00:09:19,200 --> 00:09:27,120 So that's an encounter that that I can remember. Another is when I was working as an expert with UNESCO 76 00:09:27,570 --> 00:09:31,920 I had the opportunity to attend an expert meeting in Paris. 77 00:09:32,520 --> 00:09:45,510 And it was the week after the Charlie Hebdo incident and the hotel in which I was staying, 78 00:09:45,960 --> 00:09:57,480 as well as just walking on the street, I was made to feel visibly, you know, sort of appreciably unwelcome. 79 00:09:57,840 --> 00:10:03,840 The hotel staff were unwilling to answer questions or provide directions. 80 00:10:04,500 --> 00:10:08,550 And it was very, very difficult at the time. 81 00:10:09,180 --> 00:10:19,770 And again, it was an action of a minority that was sadly impacting our ability to have any sort of rapport and meaningful conversation. 82 00:10:20,010 --> 00:10:30,080 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. 83 00:10:30,770 --> 00:10:35,120 Interestingly, the next day I was in the same ward, on the same bay, 84 00:10:35,570 --> 00:10:43,010 and our exchange must have been heard by the patient next to the original patient that I'd mentioned. 85 00:10:43,010 --> 00:10:46,610 And the first thing he said was, It's wonderful to meet you. 86 00:10:46,610 --> 00:10:53,989 You're more than welcome. And I knew that he was responding to what had happened the day before. 87 00:10:53,990 --> 00:11:01,580 And it was incredibly heartening, you know, and for that to happen the day after was something that was very, 88 00:11:01,580 --> 00:11:05,239 very uplifting and really informed my practice, 89 00:11:05,240 --> 00:11:17,090 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. 90 00:11:17,090 --> 00:11:24,830 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. 91 00:11:25,970 --> 00:11:34,910 The Paris encounter was a lot more challenging and I didn't deal with it very well in that I was silent, 92 00:11:35,000 --> 00:11:44,090 I didn't respond and I simply walked away and managed to make ends meet for myself in the way that I could. 93 00:11:44,720 --> 00:11:48,080 But I reflect now that if I were to return to that hotel, 94 00:11:48,080 --> 00:11:56,090 I probably would want to sit down with the staff and ask them what it was like for them to encounter 95 00:11:56,780 --> 00:12:07,159 somebody who is visibly Muslim and what that meant for them and for us to be able to have a more 96 00:12:07,160 --> 00:12:12,500 open dialogue. I think that's very brave of you and also very beautiful of you to still want 97 00:12:12,500 --> 00:12:17,989 to have such an open discussion because people have hurt you at that stage, 98 00:12:17,990 --> 00:12:22,880 but you would always be willing to keep the conversation going, if I understand you correctly. 99 00:12:23,270 --> 00:12:26,840 Oh, their position is also from a place of hurt. 100 00:12:27,380 --> 00:12:32,990 And recognising that and respecting that, first and foremost is so important. 101 00:12:33,470 --> 00:12:45,100 Thank you very much for sharing those two stories. Now it's time for the mini lecture. 102 00:12:45,700 --> 00:12:50,230 Mehrunisha, please, could you tell us why it's so important to understand racism in health care? 103 00:12:50,890 --> 00:12:54,190 I'll give you a minute. So whenever you're ready, please go ahead. 104 00:12:54,730 --> 00:13:00,160 Understanding racism in health care is critically important for a number of reasons. 105 00:13:00,520 --> 00:13:08,739 The first is that one of the core values of our health care system is that it ought to 106 00:13:08,740 --> 00:13:15,190 be accessible to everyone and that access ought to lead to good outcomes for everyone. 107 00:13:15,490 --> 00:13:24,760 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. 108 00:13:25,060 --> 00:13:33,520 Because of their race is something deeply, deeply problematic that we need to spend more time researching and understanding. 109 00:13:34,030 --> 00:13:40,479 The other really important issue is our health care workforce is one that comprises 110 00:13:40,480 --> 00:13:47,790 of diverse people and a diverse workforce is a more successful workforce. 111 00:13:48,040 --> 00:13:58,480 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. 112 00:13:59,020 --> 00:14:03,310 I often wonder, how can I be better and how can I learn and grow about this topic? 113 00:14:03,820 --> 00:14:09,550 And I think one way to do so is by educating myself through reading books, listening to podcasts like this one. 114 00:14:09,880 --> 00:14:14,350 What would you recommend being the best method of learning about racism in health care? 115 00:14:14,620 --> 00:14:20,769 Books and podcasts. Absolute must. But what I would say in our society, 116 00:14:20,770 --> 00:14:31,600 where people are heavily reliant on social media echo chambers that prevent them from benefiting from that human connection. 117 00:14:32,230 --> 00:14:39,070 Being face to face with someone that they disagree with and that sort of environment 118 00:14:39,070 --> 00:14:43,900 is critically important for us to be able to recognise and respect one another, 119 00:14:44,170 --> 00:14:52,090 but also to understand that difference is critical for our society to grow and to develop. 120 00:14:52,660 --> 00:14:58,479 As we said earlier, ethics transforms, and in order for us to flourish as a society, 121 00:14:58,480 --> 00:15:05,530 we need to not only recognise but also respect that difference across political, ethnic and other divides. 122 00:15:05,800 --> 00:15:12,880 Do you know of any other policies which may be even targeted at entire communities or countries to minimise racism in health care? 123 00:15:13,300 --> 00:15:23,890 Are there any solutions, so to say? There's been growing investment in training for health care professionals to try and mitigate unconscious bias, 124 00:15:24,100 --> 00:15:28,960 but also to address this issue of racism head on, 125 00:15:29,380 --> 00:15:37,720 a few colleagues and I will be running a training session on addressing racism in health care 126 00:15:37,720 --> 00:15:45,040 and what we are looking forward to is producing guidelines alongside the Royal College of Paediatrics, 127 00:15:45,220 --> 00:15:52,660 and we're looking to other organisations like the General Medical Council to take the lead from the British Medical Association, 128 00:15:52,660 --> 00:16:07,260 who recently produced guidance on this also. What have we learned about inequalities in the pandemic response during the COVID pandemic, 129 00:16:07,740 --> 00:16:12,660 and what are ways to make future preparation more effective and more equitable? 130 00:16:13,260 --> 00:16:17,070 Could you please provide us with examples of inequalities during the pandemic? 131 00:16:17,280 --> 00:16:28,050 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. 132 00:16:28,320 --> 00:16:39,810 People from the black community, particularly black men, were four times more likely to succumb to the virus than those of other ethnic groups. 133 00:16:40,140 --> 00:16:50,160 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, 134 00:16:50,490 --> 00:16:59,430 what we found is that people from ethnic minority communities have been 30-40% times 135 00:16:59,430 --> 00:17:06,120 more likely to encounter loss in their income compared to other communities. 136 00:17:06,360 --> 00:17:12,210 And why do you think that is? The backdrop to the pandemic is very, very important. 137 00:17:12,510 --> 00:17:21,600 We had prevailing inequalities in our society when it comes to health, education, people's financial position. 138 00:17:21,960 --> 00:17:27,930 And what happened subsequently within the pandemic was that these inequalities were 139 00:17:28,980 --> 00:17:36,360 further exacerbated because of the sorts of interventions that needed to be administered. 140 00:17:37,110 --> 00:17:41,040 The UK has one of the lowest provisions of statutory sick pay. 141 00:17:41,430 --> 00:17:47,760 People also weren't able to access isolation payments during the pandemic when they needed to, 142 00:17:47,940 --> 00:17:53,580 and that meant that particularly people with low quality jobs, 143 00:17:54,600 --> 00:18:00,839 precarious contracts who were self-employed, were incentivised to continue to go out to work. 144 00:18:00,840 --> 00:18:04,500 And it meant that they were more at risk of being exposed. 145 00:18:04,770 --> 00:18:10,950 And this was particularly true for people from it, from a low income, more deprived background. 146 00:18:11,280 --> 00:18:18,569 Right. But then if if I'm hearing you correctly, you're actually saying we should try to decrease inequality in society first, 147 00:18:18,570 --> 00:18:22,790 and then after that we would have a more equitable response. 148 00:18:22,800 --> 00:18:25,760 But that's quite a challenge. Absolutely. 149 00:18:25,890 --> 00:18:36,650 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. 150 00:18:36,660 --> 00:18:40,320 It's not something that is afforded by access to good health care. 151 00:18:40,680 --> 00:18:50,200 It's through good housing, education, regular income, good quality jobs that people are afforded opportunities for good health. 152 00:18:50,220 --> 00:18:53,250 And just out of curiosity, like, what you just suggested 153 00:18:53,790 --> 00:19:00,750 Is that something that's actually happening right now? We did some work engaging with the public. 154 00:19:00,960 --> 00:19:06,480 And the public's view is incredibly important in order to drive political change. 155 00:19:06,990 --> 00:19:14,399 And what we are learning is that the public are becoming more aware of these inequalities, 156 00:19:14,400 --> 00:19:21,570 the sorts of numbers and the pictures of the people who are succumbing to the virus early on in the pandemic 157 00:19:21,870 --> 00:19:30,630 and conversations about justice and fairness has become a lot more live in, you know, in our shared consciousness. 158 00:19:30,990 --> 00:19:38,220 And that's a critically important juncture from which we can then enact the right sorts of policies and change. 159 00:19:38,700 --> 00:19:43,379 So we always end the interview by asking what your personal advice would be as 160 00:19:43,380 --> 00:19:48,250 well as your career advice for students and young professionals worldwide. 161 00:19:49,530 --> 00:20:00,000 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. 162 00:20:00,840 --> 00:20:06,780 Be brave and don't be afraid of asking questions that haven't been asked before. 163 00:20:07,110 --> 00:20:19,020 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. 164 00:20:19,830 --> 00:20:25,380 Conducting research and persisting can be incredibly isolating, incredibly difficult. 165 00:20:26,100 --> 00:20:35,009 So do make sure that you rely on others and form a community for yourself and also establish that, 166 00:20:35,010 --> 00:20:37,470 you know, in terms of your role in supporting other people. 167 00:20:37,710 --> 00:20:44,680 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. 168 00:20:44,700 --> 00:20:48,750 There will definitely be more people who are feeling the same as you. 169 00:20:48,900 --> 00:20:57,660 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, 170 00:20:58,470 --> 00:21:01,160 either in their personal life or in their professional career. 171 00:21:01,910 --> 00:21:08,990 Is there any way you could assist them in how to reply to such injustice or what may be appropriate steps to take? 172 00:21:10,130 --> 00:21:16,490 Prejudice, racism is incredibly difficult to experience and encounter. 173 00:21:16,490 --> 00:21:21,170 The first thing to see is it's deeply, 174 00:21:21,170 --> 00:21:30,020 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. 175 00:21:30,440 --> 00:21:35,570 It is something that is sadly prevalent. 176 00:21:36,290 --> 00:21:39,490 And do seek out advice. 177 00:21:39,500 --> 00:21:47,060 There's lots of services that are available to students and peer support mechanisms. 178 00:21:47,450 --> 00:21:54,670 And the other is, again, seek out people who you think are potential safe spaces. 179 00:21:54,680 --> 00:22:00,860 I've certainly done that for myself through advice from senior colleagues who've said, you know, 180 00:22:00,860 --> 00:22:09,320 let's not make our relationship just about work, but about care for one another and just sharing the day to day. 181 00:22:09,620 --> 00:22:17,300 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. 182 00:22:17,810 --> 00:22:21,520 Well, that's beautifully set. Thank you so much, Mehrunisha, for your time today. 183 00:22:22,670 --> 00:22:29,720 Join us for the next episode of Science with Sanjula where I'll be talking to Professor Keith Hawton about mental health.