MIC CAVAZZINI: Welcome to Pomegranate Health, a podcast about the culture of medicine. I’m Mic Cavazzini for the Royal Australasian College of Physicians. We’ve talked before on the podcast about the gap in various health outcomes between Indigenous and non-Indigenous people. If you just look at life expectancy this is 8 to 9 years lower, on average, for Aboriginal and Torres Strait Islander people compared to other Australians. In Aotearoa-New Zealand, the life expectancy gap between Māori and Pākehā is around 7.5 years. These figures have crept down in recent years and as we’ve heard in past episodes, there are encouraging examples of services co-designed and led by First Nations people. The broader health system too, is full of people who want to make an impact in this space, but today we’re going to ask why progress has been so slow.
It’s easy to wave this off to socio-economic factors, but according to an analysis by the Australian Institute of Health and Welfare those, independently account for only a third of the health gap between Indigenous and non-Indigenous Australians [p23]. Lifestyle factors like smoking, alcohol and diet contribute another 19 per cent. But 47 per cent of the difference in health outcomes could not be explained by the model, which makes you wonder just how much unwarranted variation there is in the delivery of care to different people.
WENDY EDMONSON: Well, I think the social determinants of health do play an enormous and critical, particularly poor housing, poverty, lack of access to employment, education. But when we look at health care systems historically in Australia, those systems have let Aboriginal people down in terms of the quality of care and access to appropriate care. I’m Wendy Edmonson of the Wattandee and Badimaya Yamaji peoples.
MIC CAVAZZINI: The RACP is very lucky to have Wendy Edmonson as a cultural advisor after her more than 40 years experience working in Aboriginal health. Notably she’s directed Aboriginal health services in Central Australia, the Pilbara and in suburban Adelaide. She’s been a Churchill Fellow and recipient of the NAIDOC award. Wendy was also until recently Associate Professor at the Poche Centre for Indigenous Health and Wellbeing at Flinders Uni and in May last year she published a cultural safety guidebook for health professionals.
In today’s podcast we’re going to try and understand the impact that racial bias makes on the quality of healthcare. This story isn’t intended to blame and shame, but just to highlight the subtle drivers at different layers of service delivery. For individual practitioners implicit bias can affect clinical decision-making. At an institutional level there may be known resourcing issues not being addressed, like availability of translators to help diverse patients understand their care. And all this takes place within the context of structural racism, the inequity that was long ago baked into society’s power structures, particularly in colonised countries like ours.
There are examples of such variation in clinical care wherever you look that don’t obviously relate to problems with access. For example, racial disparities in the provision of analgesia were brought to light over 20 years ago but are still occurring today. In research from the UK just published in March it was found that women of African or South Asian descent were significantly less likely to receive an epidural during vaginal birth, or instrumental assistance with the delivery. Women of colour were, however, much more likely than White women to be given general anaesthesia during an elective C-section, which is known to increase the risk of adverse maternal outcomes. The reasons for this systematic variation in practice were not identified, and might, in part, reflect the preferences of different cultural groups. But if that’s the case, it behoves us to address gaps in health education in a culturally sensitive way. Here’s Wendy Edmonson again with a few documented examples of disparities in care between Aboriginal and non-Aboriginal Australians.
WENDY EDMONSON: And those examples include lesser access to transplants. It's been researched and highlighted that often Aboriginal people are overlooked for kidney transplants, for example, because there is a view that there will be non-compliant with the treatment regime and taking of medication after a transplant. Another area is pain management, there is a false belief that Aboriginal people can experience pain at higher thresholds. This is not the case, it's just that pain is expressed differently in an Aboriginal and Torres Strait Islander context. Access to angiograms is less for Aboriginal people, particularly Aboriginal women who experience a cardiac event. So what we're seeing here, and that applies to oncology and gastroenterology as well, there are numerous examples of Aboriginal people not receiving the same level of treatment as non-Aboriginal people.
MIC CAVAZZINI: We’ll pick up on a couple of the examples you mentioned later. It’s not just First Nations people who experience this variation in care. Some of Australia’s more minoritised migrant populations do so as well. To advocate on their behalf, we have with us the College Dean, Dr Kudzai Kanhutu, calling in from Melbourne. Welcome to the podcast, Kudzai.
KUDZAI KANHUTU: Pleasure to be here, Mic, and lovely to be on the call with you too, Wendy.
MIC CAVAZZINI: So you’re an infectious diseases physician at Royal Melbourne Hospital. You established the hospital’s telemedicine service and through the Doherty Institute you conduct research on health equity through digital tech. This has earned you a 2019 Women's Agenda Leadership award and the Victorian Department of Health award for excellence in culturally and linguistically diverse care. What set you on this journey? Was it your experiences as a patient in our health system, or moreso as a doctor?
KUDZAI KANHUTU: Which of the two? I think—I’m not sure how Wendy will feel about this—I think that journey of being involved or co-opted to the cause of health inequity, and the reasons for it and lots of the structural barriers to people accessing and enjoying good health care, begins by default because of who you are. I think there's that famous saying of, “You don't see the world as it is, you see the world as you are.” And that really comes to the fore when you're coming to Australia as a migrant by virtue of who you are and what you appear to be to the world. So I would say the journey started from birth, if not before birth.
One of the things I've reflected on is that often the version of racism that people feel most comfortable discussing or debating is the pointy end. You know, the stuff of The Color Purple, the sorts of films that we grew up watching where it's so overt, and it's so traumatic, and it's cast in that very historical lens of all these are all the bad things that our forebears did that we certainly can see were objectively inhumane and unkind behaviours.
Where I feel the conversation needs to head is to start to point to the real-world examples where it's very easy from a management perspective to brush it aside. Case in point, the model minority myth. And it particularly affects people of Asian background, where there is this myth that everybody from an Asian background must be good at maths and are always really highly driven. And they're high performers, and they'll always be nice and polite in environments.
And that sort of belief is a limiting belief because it tells people of a certain background, that there are only certain ways that you must behave for you to be included and for you to form part of our society. And it means that if somebody from that background has an adverse experience, and they speak up, suddenly they've outed themselves as not fitting into the mould that people are most comfortable seeing them within. And that is at the heart of inclusion that you should feel free to turn up however you come, which racism denies people; that basic human rights to turn up as who you want to feel included and respected for that.
MIC CAVAZZINI: What Dr Kanhutu has described is sometimes called “casual” racism, thought it certainly has real world consequences. In a later episode we’ll talk about the experience of Māori medical students and Trainees and how this is affecting the representativeness of our physician workforce in Aotearoa. But I want to focus on the subtle racial judgement expressed by even the most well-intentioned people. This gets termed implicit bias because it’s not consciously expressed.
In 2021 a 36 year old Kamilaroi and Dunghutti man called Dougie Hampson presented to Dubbo Base Hospital vomiting and with what was described as a “popping" and "tearing" sensation in his stomach. He was given painkillers and sent home but died 18 hours later from perforated duodenal ulcers. Dougie’s father believes that staff hadn’t bothered investigating more thoroughly because Dougie had described himself as a marijuana smoker. Nausea and stomach pain are symptoms of withdrawal among some heavy users so it’s not completely off as a diagnostic hypothesis. But was it too easy to latch onto this because of stereotypes of drug misuse among Aboriginal people? Or was it just the pressures of an underresourced healthcare setting?
Dougie Hampton’s death came almost five years after a scathing coronial inquest into the death of Wiradjuri disability worker, Naomi Williams. She was 27 when she died from a sepsis-induced cardiac arrest on New Years Day of 2016. Naomi been sent home from Tumut Hospital with Panadol following less than an hour of observation. But it’s not the details of that final presentation that most concerned the presiding coroner, it’s the fact that in the seven months before her death Naomi had attended the hospital 18 times, and town medical centres just as many again.
Naomi presented repeatedly with complaints of nausea, vomiting and gastric pain. At various points, different doctors had grounds to pursue diagnoses ranging from H. Pylori infection, hypokalaemia, a functional syndrome relating to a historic cholecystectomy. And in mid-August, Naomi was found to be 6 weeks pregnant, so the hyperemesis was assumed to be related to this.
One practitioner did at some point discuss sending Naomi to the Wagga Base Hospital for a gastroscopy and a specialist consult but never got around to writing the referral. Instead, the doctor appeared to get stuck on Naomi’s self-medication with cannabis, even though the Drug and Alcohol team found no dependence issues.
Just from reading the 60 page coronial report it’s hard to draw a line around any one management decision and say that it was overtly racist. Most seemed clinically defensible in their own right, though there are shades of the heuristics in diagnostic reasoning we talked about in podcast episode 32; anchoring bias, the framing effect, premature closure. Such mental short cuts are no so different from the dictionary definition of prejudice; “an unfair and unreasonable opinion or feeling, especially when formed without enough thought or knowledge.”
The Deputy Coroner had little doubt that ethnicity influenced the way Naomi Williams was cared for, telling newspapers “If I look at it from my own experience as a middle-class woman in the eastern suburbs, my perception is I would have gotten a referral. I wouldn’t have gone 18 times and not gotten a referral.” She described the case management as “largely reactive …[with]… a reluctance to take a proactive, leading role in Naomi’s health care.” This reluctance seems to have come from the fact that Naomi, on a few occasions, discharged herself rather than staying for further observation.
But such behaviour is common among Aboriginal patients who don’t feel respected in healthcare settings, and several Aboriginal witnesses told the inquiry they had doubts about the Tumut service. Naomi’s mother had even written to the hospital management saying that her daughter felt she was being stereotyped and ignored. On hearing this, the Deputy Coroner reprimanded administrators for failing to escalate patient care after so many repeat presentations, and for not making better use of Aboriginal liaison services. I asked Wendy Edmonson what she made of tragedies like those of Naomi Williams and Dougie Hampton.
WENDY EDMONSON: We see this pattern repeated over and over again at hospitals throughout the country, where when an Aboriginal or Torres Strait Islander person walks through the door there is immediate labelling of that person as being a problem, as fitting various stereotypes of being a drug user, of being somebody who will be noncompliant, who might take their own leave, who may not see the treatment through. And so when you're starting from that base level of knowledge, the health professional can make some ill-informed judgments which can lead to adverse health outcomes. So if you believe the person is just there to try to get drugs, and you see that when you hear about deaths in hospitals of Aboriginal and Torres Strait Islander people, that people won't look any deeper.
I know that there have been a number of coroner's reports but the one that comes to mind is in a place called South Hedland, which is inland from Port Hedland. I worked in Port Hedland, I managed the Aboriginal Medical Service there. But this case involves a young woman who was arrested on unpaid fines. She had been beaten by her boyfriend a few days before and had, unbeknownst to anyone at the time, some broken ribs. And she was in a lot of pain, but the police officers who were managing her care were of the view that she was withdrawing from drug addiction.
They took her to the hospital three times, and this is where the health staff failed her. They didn't do the rudimentary investigation you would do for any patient coming through the door; temperature, blood test, and doctors at that hospital gave feedback that Ms Dhu was okay to go back to the prison cell, which happened. And eventually she developed sepsis and passed away. But if you see some of the footage around those incidents, as somebody has described it, she was dragged like a kangaroo to the paddy wagon to be taken to the hospital.
She was let down by the system, the correction system, the health system, and she had nobody to help her, nobody to advocate, nobody who could act on her behalf and stop this disgraceful situation. And last week, I read that the doctor involved was not going to be disciplined by AHPRA. And I think the police officers were not disciplined either and, in fact, two of them have gone on to be awarded promotions. So what it says to me and other Aboriginal people is that doctors can behave in this way, through their inaction, contribute to the death of a young Aboriginal woman. There are no consequences—and that's what we're seeing no consequences. So when we talk about sanctioning health professionals or the health services they work for, there has been very little action. And it's a common story.
MIC CAVAZZINI: I read that incident as well. In fact, the coroner’s report was quite fascinating. The WA coroner was quite remarkably attuned to the pernicious influence of structural racism on the quality of this woman’s life and her care. Interestingly she wrote—and I took this quote down, “I do not find that any of the health [HHC] staff or police were motivated by conscious deliberations of racism in connection with their treatment of Ms Dhu, nor does Ms Dhu’s family make that submission.…. However, it would be naïve to deny the existence of societal patterns that lead to assumptions being formed in relation to Aboriginal persons.
This is not a matter only for the health service [HHC], or its staff or the police. It is a community-wide issue…” She admits baldly that correctional officers “disregarded her welfare and her right to humane and dignified treatment” but ends by saying, “It is my hope that the recommendations I have made will avoid deaths occurring in similar circumstances.” I sort of took a little bit of heart from hearing that there is within the justice system—people that get it. It’s harder to know what to make of AHRPA’s decision and the culpability of the particular doctor.
WENDY EDMONSON: And unfortunately, it's only coroners that seem to get it, but they can only make recommendations. They can't change policy and practice. That's got to come from management of hospitals, from senior people in police forces. And that's where we see a lack of lack of action.
MIC CAVAZZINI: Let’s continue with the idea of variation in care. And you mentioned diagnostics in cardiology before. You know, sometimes the variation in care—or the stereotypes aren’t necessarily pejorative stereotypes, but still they lead to clinical error. And there’s a well-known study from 2016, an audit of medical records that looked at admissions of Aboriginal patients to South Australian Health services for acute coronary syndrome. The good news is there was no difference in revascularisation rates of patients who had undergone angiography, and the medication rates on discharge were comparable too. But the discrepancy was that Aboriginal patients were half as likely to undergo angiography in the first place once data were adjusted for age, comorbidities and remoteness.
Then the researchers dug deeper to find out if there was a good reason recorded in the notes for skipping an angiography. In 20 per cent of the Aboriginal patients in this boat there was a patient-related reason. Either they didn’t want the test or they even discharged themselves against medical advice. Wendy—what do high rates of self-discharge tell us about cultural safety of these institutions?
WENDY EDMONSON: There are a number of factors that contribute to people taking their own leave. One is they may be acutely unwell and once people are feeling better they will discharge. Because Aboriginal and Torres Strait Islander patients find healthcare settings unsafe, culturally unsafe for a range of reasons including historical mistrust. In the past, hospitals took babies away at birth; that hospitals are places to die, and that is a common perception with Aboriginal patients coming from northern communities to South Australia for cardiac surgery, that they will die in the hospital down south away from community away from country. Hospitals are an alien, frightening environment where there may be trouble understanding.
I was very ill a couple of years ago and I ended up being hospitalized in Alice Springs Hospital. The rates of Aboriginal people taking their own leave from that hospital is very high. When I was there, I witnessed that people did not have access to interpreters. That often Aboriginal people were so distressed they were calling out loudly and when I was in a ward, a lady from one of the communities was put in the ward beside me, she was very distressed as well. But she needed to be by the window so that she could see the country. Being distant from that connection, a lot of patients, Aboriginal patients, went outside because they needed to be outside and close to country. And also, the air conditioning in many hospitals—and Darwin hospital is notorious for this—is very cold, and people coming in from communities aren't used to air conditioning. And so self-discharge. And then they are blamed by the hospital for doing that.
MIC CAVAZZINI: For not understanding the condition and how it’s treated.
WENDY EDMONSON: Absolutely. They're irresponsible, labelled irresponsible by health professionals. Those health professionals aren't necessarily aware of the deep underlying root causes of people not accessing health care. And it's easier to blame the individual than the system.
MIC CAVAZZINI: Going back to that study. In 44 per cent of Aboriginal patients a justifiable clinical reason was given for not performing an angiography. For example, you don’t order an angiography when the coronary event appears to be non-ischaemic, and such cases were slightly more frequent in Aboriginal patients. That might be well and good, but in 36 per cent of Aboriginal patients no explanation for a conservative approach was recorded at all. By comparison that only happened in 10 per cent of non-Aboriginal cases—while clinical reasons were given most of the time. That lack of attention is the concerning part. Kudzai, what do you think is going on? Are they just putting Aboriginal patients in the too-hard basket, and moving on? Is there any excuse for such practice?
KUDZAI KANHUTU: There's no excuse for it. It's not something that anyone should be searching for an excuse for. What it is asking, really, is the question, why is it happening? And so that finding of there being a discrepancy or a lopsidedness around what's in the clinical record, is really a demonstration of the power dynamic that we work within a hospital. “The notes are not for you, patient, they’re for me, and my team and my people.” And that the patient finds themselves on the other side of that dynamic. And the clinical record is often not structured or designed to be helping the patient to navigate their care. And it goes to the conversation that many countries have had around “open notes,” that those notes should absolutely be the patient's property.
But I'd hazard a guess that if you'd looked at it, for other groups that experience structural disadvantage, you'll find a very similar pattern. People who fit into that category of, “You will do as you are told in this clinical dynamic and it's not an open conversation for you to guide or direct what happens next.” It is not uncommon to find that what is documented doesn't reflect the standard that I think we as modern clinicians aspire to. So it's news, but it's old news.
MIC CAVAZZINI: Our stereotyped understanding of other cultures usually comes from a lack of exposure. Learning about them in advance can help us get over the novelty or, dare I say it, xenophobia. But “cultural competency” training only goes so far, because it comes from an unspoken assumption about what the cultural baseline is. English language and Anglo-European frameworks are the “norm,” and anything else is some exotic deviation that requires special training.
But as Deakin Professor of Nursing, Megan-Jane Johnstone, and Olga Kanitsaki have written “a fact-centred approach to cultural competence education can lead learners to make false generalizations and develop stereotypical views about given cultural groups, and thereby perpetuate rather than redress culturally incongruent care practices.”
An alternative concept known as “cultural safety” was developed 20 years ago by Māori nurse, Irihapeti Ramsden. She made the point that you can’t learn to be competent in someone else’s culture. You’ll never understand all the ins and the outs, and that shouldn’t be necessary to be able to establish a safe working relationship. But it is important to be aware of how our own cultural framework shapes the way we see the world and judge others.
It’s easier said than done. In validating a tool to measure implicit bias, researchers found that almost every participant in their study thought that they were less biased than their peers. The same paper, published 2015 in the journal Management Science reported that interventions aimed at reducing bias rarely made much impact on this test score.
The authors of a 2021 review in the Future Healthcare Journal were a little more optimistic. They proposed this mental checklist for minimising prejudice during diagnostic workups; “Consider whether data are truly relevant, rather than just salient. How did I reach my diagnosis? Did a patient or colleague suggest the diagnosis? Did I ask questions that would disprove, rather than confirm, my current hypothesis? Is this a patient I do not like or like too much for any reason? Am I stereotyping the patient or presentation?” Wendy Edmonson shares her experiences about training healthcare staff in this space.
WENDY EDMONSON: I think historically, in medical schools in particular, that non-Aboriginal medical students are looking for a tick box type approach; the do's and don'ts; don't make eye contact; be aware of body language; do not ask direct questions. This approach obviously does not work because of the diversity within Aboriginal communities. That you might have an Aboriginal community which doesn't practice any of those elements. So what happens is we have this exoticisation or othering of Aboriginal people according to common stereotypes, rather than the recognition of diverse communities which have differing practices, if at all.
Say you're from the Stolen Generation, you may not have had any involvement with your culture. My grandmother's generation, they were made to feel ashamed of their Indigeneity. She told people that her father was an Indian man from the subcontinent, rather than say he was an Aboriginal man, because of the shame about identifying at the time. Eventually, she did come to a point where she felt comfortable, as did my grandfather. They were both taken away at various periods in their childhood for different reasons, but they are both able to return to their families and reconnect. And so the subsequent generations of my family have felt very strongly about our culture and learning about it.
MIC CAVAZZINI: I think of that all the time. Like you say they may not choose to put that identity front and foremost. Sometimes they don’t want to be the colleague you go to consult about race. And I am curious about people's backgrounds but I've got the privilege that I can brag about my Italian heritage when it suits me or keep quiet when I want to blend in. Kudzai you put this in an interesting way. How to create the space for people to self-identify without forcing them.
KUDZAI KANHUTU: It’s kind of a layered thing, right? Because I know because of the way I look, I don't get to not be this. There are certain people within our Australian society community who get to just be Aussie, no questions asked. I'm in the category of people who don't get to do that. But it's a really interesting thing, my identity, from the perspective of being an Australian migrant, because I am both the subject of colonialism, but I'm also a beneficiary. So I've left a country that was colonized by the British and it was a lot easier for me to migrate to Australia because of that colonial history.
I'm not First Nations. I'm aware of that. And I'm also aware that I'm a beneficiary of what has been an incredibly traumatic and damaging 200 plus years of colonial history in this country. And I deeply acknowledge that. So that conversation when someone asks me, on the one hand, I feel like yeah, by all means, go ahead and ask because I'm not from here. I now live here, but I'm not from here. So it's a totally legitimate question. Where I find the challenge is that people often ask from a position of being deeply centred. As in, “I'm asking you, because I'm Aussie, and you're clearly not.” It's an act of othering me. Or I you’re going to ask me, you better be ready to share where you're from to because otherwise, I don't want to have the conversation.
MIC CAVAZZINI: Yeah, two academics who’ve written a lot about this in the Australian context are Megan Johnstone, and Olga Kanitsaki. Qualitative interviews with Australian healthcare staff showed that there’s a widespread assumption that the medical workplace is objective and culturally neutral. That it was the “diverse” patients who brought their difficult customs and dietary requirements or linguistic requirements. Medicine is “a culture of no culture” guided by evidence and even timeless truths. But that’s not really true of the medical culture, is it, Kudzai?
KUDZAI KANHUTU: It's not true because Western medicine we practice in English, the studies that we rely on were developed in a very Eurocentric frame where you centre the Eurocentric approach to care. Sometimes it works really well, but a lot of the time we forget that we've made this as part of our cultural journey in medicine.
This myth of neutrality of medicine, I've very much debunked for myself. I can never just say on the basis of what I learned in medical school, or through my physician training, I am done. Don't ever put yourself in a position that, “I'm done. I know it all, I'm ready to greet all patients equally, I am the centre of neutrality, and I will deal with all things.”
And it also comes to—you know, from your professional practice perspective, actually reckoning with the fact that there are some situations where you're going to be anything but neutral and maybe you're not the best person for that clinical interaction. And have the courage to call it or to get the sort of help that you need in that moment to make you better. Because you've set aside the idea that you're neutral and you're perfect, and it's all good. And you're going to be this amazing doctor to all people. Because, I'm not God. And that's a good thing.
MIC CAVAZZINI: It’s a good sign of humility when doctors admit that they're not gods.
WENDY EDMONSON: I think it is a lifelong journey. And it often involves unlearning what you've been taught in the past. When I taught cultural safety to health sciences students, it was often met with a lot of resistance, initially, because this was an added extra, it was annoying; “Colonization is in the past”; you know, “I treat all my patients the same.” Those sorts of attitudes came through. And the other thing that came through was discomfort. Because we did some truth-telling about the history of this country. Then we talked about power, because physicians have unacknowledged power and are not even aware of that power. But it's there. And we would talk about how power manifests at all levels of healthcare, and power not being shared; the patient not having been empowered to make informed decisions.
MIC CAVAZZINI: One very literal example of agency to make decisions being denied occurs time and time again where patients are not proficient in English . One audit of medical records at a hospital in a culturally diverse part of Sydney showed that the need for an interpreter was noted in almost 16 percent of overnight adult admissions. But the professional interpreting service was called upon for only a quarter of those. And that’s despite the fact that the federally-funded Translating and Interpreting Service available for any patient with a Medicare card.
More than 870,000 Australians reported in the census that they didn’t speak English well or at all, and several thousand of these are Indigenous. In a 2020 paper it was reported that half of Aboriginal patients presenting to Royal Darwin Hospital would benefit from an interpreter. But one was booked for less than 13 per cent of those patients and only 7% of them actually got access to one. An intervention to raise awareness of this issue was only able to increase this number to 11%.
In that earlier study I mentioned from Sydney healthcare staff told researchers that booking an interpreter was an administrative burden; organising it took too much time on the phone and sometimes there wouldn’t be the right interpreter available for a week or more. Maybe you’d just put this off as a resourcing issue, but in truth it’s a systematic bias on an institutional scale that is known to adversely affect the experience of certain patients. To give the staff the benefit of the doubt, I imagine that when they skip this step they’re usually just in a hurry to get care moving for their patients. But it’s somewhat paternalistic to put this judgement above the patient’s right to understand and consent to medical treatment.
This fundamental right of patients is spelled out by the UN as well as the Human Rights Commissions of Australia and Aotearoa. And it was exemplified in a medicolegal case mounted against St Vincent’s Hospital in Sydney by Sandra George, an elderly Macedonian migrant with a poor command of English.
In 2015, she underwent a surgical resection of a neuroma on her vestibular nerve that had been causing impairments with hearing and balance. During the procedure a facial nerve was accidentally severed, leaving her with a permanent facial palsy. In the District Court, Ms George’s team argued that medical staff had failed to ascertain her understanding of the condition or the surgical risks.
When Ms George had initially seen an otolaryngologist about her MRI scan, she’d understood that she had an aggressive brain tumour that needed urgent resection. From her first appointment with the surgeon a month later, Ms George did not recall any discussion of alternatives to surgery or the relatively low risk of continued observation of the tumour. At both consults she only had a friend accompanying her whose own English was also limited.
At the next preadmission consult consent forms were co-signed by both parties, this time in the presence of an accredited interpreter, though the surgeon had no memory or notes of this meeting. The trial judge ruled in favour of Sandra George and even laid out a 16 step process for describing material risks to a patient. Although the Supreme Court decision was overturned on appeal, it served as a reminder that the gold-standard for seeking a patient’s consent should require them or their interpreters to articulate what they have understood about a proposed plan of management. Best practice guidelines also state that it’s safer to rely on professional interpreters who are able to translate medical jargon. Conversely, it’s unfair to expect a patient’s friends or family to break bad news when they haven’t been trained to do this. Here's Dr Kudzai Kanhutu again.
KUDZAI KANHUTU: Around the availability of interpreters, that is one that I think anybody in the refugee migrant community has been banging on about for years. And we know that when patients don't hear the message, and they don't have the opportunity to ask questions, the outcomes are inferior. Great evidence for that. If you come from a country or from a family or a history or tradition, where English is not your first language, that's your problem. And many hospitals don't actually reliably measure their rates of access to interpreters. It's not even recorded as a miss. It's not something that somebody would rush off and put it into their risk management tool, “Oh, my goodness, we just consented someone for surgery” or “we had a conversation about medications without an interpreter.”
MIC CAVAZZINI: There was an article in the ABC just a couple of weeks ago where a Karen woman from Myanmar said that if you directly translate the words mental health into her language it’s a term that implies mental handicap, it’s something that families are ashamed of. And the journalist noted that a lot of migrants don’t even know what the term GP meant and that that’s where you go for your general health.
This health literacy is a real low hanging fruit for health services. And it was particularly evident during the COVID-19 pandemic in the broader setting of public health and community health. Apparently 70 per cent of all deaths from the Delta strain of SARS-CoV2 were migrants. Migrants who then ended up getting blamed by a lot of the media for nonadherence to public health orders. Kudzai, you must have seen some of this struggle at very close quarters as an infectious diseases physician and as a member of one of these migrant communities.
KUDZAI KANHUTU: Yes. In short, yes. So I'm based at Royal Melbourne. So we were very much, deeply enmeshed in the COVID response. Particularly in relation to the tower response, when we had a several blocks of high-rise towers essentially cut off from access to community at very short notice. And it's consistent across multiple jurisdictions now that the people who were marginalized from that health care access and equity perspective experienced vastly inferior outcomes. So that's on the record, but anybody who works in public health and social determinants could have told you that that was likely going to be the outcome and it was just a case of watching it replicate itself.
But I think out of that, comes an opportunity to reflect on those instances where things really went well. So Cohealth, who was one of the other organizations that was then called in to really try and bridge that gap, are really expert in building and developing codesign services where there is an emphasis on inclusive care and also receiving feedback from clients and patients around how they could best have their needs met. Because they're not going to be watching the TV that you—you know, standard media. Because firstly, they're not represented there, and it's not aligned with their interests or needs or wants. So there were lots of really good things that came out of it, and some really novel approaches, and new parts of government that also emerged that were designed to be more responsive to community need.
And I think it's going to continue to hopefully flourish. So you might well be aware that the Medical Board of Australia, one of the new priorities they've put on to their accreditation roadmap is actually the elimination of racism. That's huge, you know, for it to actually become part of the way that we self-evaluate, that gives that imprimatur to organizations to say, “Actually, we're going to have to find a better way to do this because now this is the lens through which we are evaluated. If we don't do this right, we won't get funded, and we won't be supported, promoted, we won't make that next threshold or evaluation because we haven't actually shown progress against that metrics.”
MIC CAVAZZINI: So far I’ve been talking about implicit bias that can build up at the organisational level, as if it resulted from collective ignorance of staff. But in the 2018 Australian Health Review Australia’s first Aboriginal dentist, Dr Christopher Bourke, wrote that ignorance doesn’t cut it for very long as an excuse. Once you’ve been made aware of systemic variation in healthcare for different populations you have an obligation to do something about it. As Chris Bourke put it, any further inaction “turns the unintentional into intentional.” Or to quote American physician Camara Phyllis Jones; “Institutionalized racism is often evident as inaction in the face of need.”
Intention is a, sort of, definition of racism, but as we often heard during the height Black Lives Matter movement, we can’t just plead ignorance because we’ve got our heads in the sand. And it’s not the responsibility of disadvantaged people themselves to bring inequity or injustice to our attention. Is this something you’ve thought about?
KUDZAI KANHUTU: It's a huge load for community often to be in that position, repeatedly getting people to come in and let out their entrails for you to look over them and see how awful we all are or, “Tell us how bad it is, tell us what else we can do,” and that traditional reliance on having people give testimony or to wait for the next coronial inquest for that to be the moment where you do something different; it's never going to be enough. Do you know the Rumsfeld matrix?
MIC CAVAZZINI: is this the things that we know, we know?
KUDZAI KANHUTU: The things you know you don't know, and then the things you don't know you don't know. The unknown unknowns. And that's the gap, right, the knowledge to action gap. And it's something that we all experience. So I know this thing now, what on earth can I do about it? Where do I go to next? And when you expand that out to an organizational scale, and then you've got a CEO or chief medical officer or somebody who's then trying to bake that into something that is actionable, it is really hard. But I would also challenge people to go like, that's okay, you're not going to have to fix the universe and history and the future. But unless you actually get to the point of drawing up your Rumsfeld matrix and going, “Okay, these are the things that we've made a commitment to doing something about”—
Because anything that's in that quadrant, you really have to hold yourself account to it. But you also need to hold yourselves account to the things that are sitting at that periphery where you go, “Honestly, we have no capability in that space whatsoever. And even if we wanted to try, we couldn't because we've got, like many organizations do, we've got one Diversity and Inclusion officer for an organization of 8000 people.” What are they going to do? Like, what can they really meaningfully do. And don't put the pressure on that one individual to be the one who's supposed to come up with all of the solutions. Or the one person that you then trot out when there's a key event on the calendar; “Here they come, here comes Stacey from Diversity and Inclusion, she'll talk you through all the wonderful things our organization is doing.
MIC CAVAZZINI: That’s a good segue, actually to, can you quantify improvements in this space? And Christopher Bourke and colleagues Henrietta and Adrian Marrie actually designed a tool to quantify institutional racism. The scorecard was developed for Cairns and Hinterland Health and Hospital Service as it was trying to measure progress in response to its policies. Not just the fact that they had policies. The tool takes in publicly available data around five key indicators; (1) inclusion of Indigenous people in governance; (2) policy implementation; (3) service delivery; (4) employment; and (5) financial accountability. Wendy, have you encountered this formalised approach to the problem and has it worked? Does it produce results?
WENDY EDMONSON: I actually know, Henrietta and Adrian very well, and I know that their work is well respected. And it probably was of use to Cairns and Hinterland Health and Hospital Service. But whether it's going to be used by other services is debatable. Because from my perspective, unless you've got the commitment, the will the resources, and the ability to undertake transformative change in your organization, these tools are not useful. This might be done as an exercise which has good intentions, but in reality may not be rolled out. And that's been my experience of these types of models. Unfortunately, because those headings, governance, policy, service delivery, they are spot on.
MIC CAVAZZINI: If institutional racism is the collective failure of organisations, including health services, I think of structural racism as the collective failure of the society that they inhabit. It’s the prejudice that’s disseminated through ingrained societal norms and historic tropes.
The specific terms in this literature are sometimes used interchangeably but you get the idea from this quote by Camara Phyllis Jones from 2001. She writes; “Institutionalized racism… is structural, having been codified in our institutions of custom, practice, and law so there need not be an identifiable perpetrator. Institutionalized racism manifests itself both in material conditions and in access to power.”
And this is where we come full circle, in that it’s structural inequity in material conditions that leads to the higher rates of ill-health among certain communities in the first place. But the resulting disempowerment means these communities are less able to advocate for themselves and reach leadership positions where they can enact change.
Deakin University academics Elias, Mansouri and Paradies have even put a dollar value on the legacy that racialised colonial power structures have left in Australia. If you add up the lost productivity of people denied opportunity because of their race, and the costs to the health and justice systems of remediating the outcomes and generational trauma, it totals about three per cent of Australia’s annual GDP.
The role of medicine in reflecting and reinforcing structural hierarchies came up in podcast episode 68 about gendered medicine. We talked about how the age-old stereotype of the hysterical woman results in women’s pain often being neglected by healthcare staff. That stereotype isn’t just “out there” in the community; Medicine itself has played a role in formalising it over the centuries. I asked Kudzai Kanhutu and Wendy Edmonson how this manifests in the context of ethnicity.
KUDZAI KANHUTU: So I think the point you've made, Mic, is a really valid one, which is that often powerful historical organizations are the places where we go to codify structures and we go to codify and embed certain biases and prejudices. Sometimes it's not intentional, but it is the outcome. So that applies to politics; what is written in the Constitution, which is a timely conversation in this moment; what is written within hospital policies and procedures; what is written into the medical curriculum. And the sorts of activities that we fund from medical research perspective go towards codifying who is more valued, who is undervalued, who is unseen, and who is deeply felt seen and attended to when they interact with healthcare as we know it. So yes, these things are real, the places that we work help to codify some of that. But they are also by virtue of that the perfect places for unpicking it and making a difference.
MIC CAVAZZINI: I mean, I think of my journey in that long before I'd ever made friends with an Aboriginal person or a person of African heritage, I had already seen so many media that portrayed what these people were supposed to be like, I had already absorbed all of those media. And in terms of my privilege, you know, apart from my economic privilege, I can name drop cultural icons, like Shakespeare or Louis Pasteur in conversation, and that's a cultural privilege that Indigenous people don't have in their own country. That no one recognizes or respects their knowledge and their scholars.
We hear the term “decolonisation” a lot these days and not always clear what this means in practice. But we can’t ignore the fact that the sandstone terrace of the RACP offices in Macquarie Street was built a few hundred metres from where the British ships landed, the epicentre of Aboriginal dispossession. And like all the Royal Colleges, it is very literally an organ of the Crown responsible for colonisation. All those hospitals named after princes and princesses are another not so subtle nod. Wendy does this give you pause for thought when you enter these spaces?
WENDY EDMONSON: I think when you see the white middle-aged men's portraits on the wall in 145 Macquarie, it does give you pause for thought. Because what you're doing is entering the realm of white privilege. Historically, you know, it's an ancient organization when you look at Australia's timeline as a country as a nation.
I don't think too much when I'm entering a hospital. The Royal Adelaide Hospital, for example, I've had good experiences but I do recognize it's a bastion of the Western biomedical model of health and that incorporating other definitions of health or a holistic definition of health, as Aboriginal people do, probably wouldn't gain much traction.
But it's important that hospitals and other institutions have an Aboriginal space. We still need spaces for community to come together for patients, families and community members to come into that space and not be judged. Because, so often, you know, when a lot of family visit Aboriginal patients, there is often a lot of disquiet, particularly if the family are loud and seen as disruptive. So you're going to have that that ongoing tension unless there is some give in how the system is the system operates as such.
We don't have enough Aboriginal or Torres Strait Islander physicians at this stage, we need to work to increase that number. But in the meantime, we have so many physicians, non-Aboriginal physicians who are operating in a culture that is not culturally safe. And so training those physicians is a key priority. And to do that, we need the resources. We need Aboriginal leadership, which I don't think the College has enough of. The College needs to make a serious commitment to empowering Indigenous stakeholders to make that change.
MIC CAVAZZINI: Kudzai, I sent you that foreword from the Lancet titled Black Lives Must Matter More, where the editors did some truth-telling of that journal’s 200 year history. Quote; “The Lancet is a journal with a deep colonial history: the journal has published work that supported the health of settler colonialists and that prioritised their health over those who were dominated and oppressed… We pledge our solidarity with the Black Lives Matter movement. But we must now turn that pledge into concrete actions in our own work, through the research we publish, the authors we commission, and the individuals we choose to profile and recognise.” And the RACP, too, has in its vision statement that “We indigenise and decolonise”. We’ve signed support for the Uluru Statement of the Heart. What other practical things must our organisation do to decolonise?
KUDZAI KANHUTU: One thing that is really important is for the for the organization to remember what core businesses is. We are a medical education organization, that is our number one priority. So we've got curriculum review coming up. What does decolonizing a curriculum look like? What are the entrustable professional skills or activities that we are going to be teaching that next generation of clinicians and practitioners. How do we help them to navigate that discomfort?
So from within the Office of the Dean, I'm thinking around the Foundation and the way the research grants are administered. And if you're going to have an Indigenous grants program, how do you evaluate that and do that in a way that really centres First Nations voice? And then the evaluation once that grant has actually been disbursed, really reflects the sort of impacts that we want to see when we talk about indigenizing and decolonizing.
It's our Global Health strategy, which countries will we partner with? What does that dialogue look like that respects people as partners, equal partners, as opposed to the traditional model of we come riding a horse, and we bring money and things, and then you either come with us or we'll ride on to the next outpost. “This is what the College does” and “this is how we do things in Australia.”
And one other thing that I wanted to share on behalf of trainees who have come to me in quiet moments and spoken about their experience of being a physician and on the physician training pathway, is that it is engineered to make it more comfortable for certain types of people to get from start to finish in the exam pathway. And I would dearly love for the College to actually commit to that conversation and to having those voices heard around the experience of sitting in a clinical exam when you look a particular way, or you come from a certain background, where you feel that that environment is not supportive and it doesn't make you feel safe enough to succeed.
So it sometimes means that we need to leave ourselves open for that external gaze of evaluation. We are who we are, and my preference would be that you own the history that you have, and you're able to speak to it and also to evolve. Because culture is dynamic and the politics around racism also really dynamic. But there is this one goal, which is that—it's just around equity and people feeling valued, respected when they engage in health care. Everyone in the College has something that they could really hold on to and say, “Look, I'm just going to do this one thing differently. And one thing at a time we get to a better place.” That’s my optimistic....
MIC CAVAZZINI: Thank you, it's nice to end on an optimistic note. And thanks for giving up two hours of your time.
KUDZAI KANHUTU: Thank you.
WENDY EDMONSON: Thank you.
MIC CAVAZZINI: At the Annual General Meeting of the RACP in early May, 84 per cent of members voted in favour of including an Indigenous Object in the College Constitution. The document now represents a written commitment to promote the principles enshrined in the Uluru Statement from the Heart and Te Tiriti o Waitangi, to advance justice and equity in health care for First Nations people, and to acknowledge the world views and cultures of Aboriginal, Torres Strait Islander and Māori peoples.
Thank you so much to Wendy Edmonson and Kudzai Kanhutu for sharing their personal and professional experiences for this episode of Pomegranate Health. For more on this topic go to racp.edu.au/podcast where I’ll link some great resources from the RACP online learning pages. There’s are elearning courses on Working with Migrants and Asylum Seekers and on the sensitivities of genomic medicine in First Australians and also some old podcasts featuring Aboriginal and Māori health professionals that are real ear openers. I’ll also link to some excellent videos on “understanding bias in health care” from the Health Quality & Safety Commission of Aotearoa New Zealand featuring academic experts and clinicians talking frankly about how they became aware of their own hidden biases.
You’re always welcome to get in touch by email, that’s email@example.com, and to share this podcast with friends. I want to thank the physicians and colleagues who helped me improve drafts of this story, and the producers who assisted with recordings in Wurundjeri and Kaurna Country. They’re all credited at the website along with the musical artists you’ve heard. I’m Mic Cavazzini, and this podcast was produced by the waters of the Gadigal people. I pay respect to their storytellers who came long before me.