All paediatricians are complicit in delivering a racist healthcare service

Cite this article as:
Zeshan Qureshi and Anna Rose. All paediatricians are complicit in delivering a racist healthcare service, Don't Forget the Bubbles, 2021. Available at:
https://doi.org/10.31440/DFTB.33938

We’re supposed to be the nice ones. The friendly, fun, caring and supportive speciality – right? We’re the ones who have teddies on our stethoscopes and know all the words to Disney songs. In the hospital, we’d like to think we’re the Good Guys – but maybe we’re not when it comes to race. 

The COVID-19 pandemic has been a monumental challenge to the NHS and has, undoubtedly, showcased the everyday heroism of our staff. It has also thrown a sharp light onto the ongoing racial inequalities in our society and healthcare systems. Racial disparities in the pandemic have been widely documented – and make for sobering reading. Analysis of national hospital data suggests that people of black and other minority backgrounds are up to twice as likely to die from the virus, as compared to white Britons – with some groups, such as black African-born men living in Britain, having an even higher risk [1]. Despite this, we have little doubt that the major impetus for the unprecedented emergency measures, national lockdowns, and political obsession was not the deaths of the poor, the ethnic minorities, or those in low and middle-income countries – but the perceived threat to wealthy, predominantly white, Westerners.

In an eerie parallel to the racial inequalities highlighted by the pandemic, the past year has also seen racial tensions in the USA reach boiling point. Following several high-profile incidents of police brutality, there was an eruption of social unrest and protest in America and around the world. The systemic disregard of black lives is not just written in blood on American pavements. It is written into the systems that surround us in our everyday working lives. As a speciality, and in the NHS as a whole, we must confront these engrained systemic inequalities, if we are to provide truly equitable care to all of our patients. 

In this blog series, we will examine how clinical outcomes for common paediatric conditions are worse for children from minority ethnic backgrounds. Stillbirth, low birth weight and preterm birth are all more common in minority groups as compared to white northern European populations [2,3,4 ]. Outcomes for common chronic conditions, such as asthma and type 2 diabetes, are also worse for children within minority groups [5,6]. This could be because care received by children with chronic conditions is worse. Non-white children with renal failure are less likely to pre-emptively receive a renal transplant, for example [7]. There are also complex social and environmental roots to these adverse health outcomes – such as increased poverty in non-White groups [8] — and we will try to investigate these issues in more detail. 

We will also explore how paediatrics has normalized white Northern European genetics, physiology and behaviour, leading to biased clinical decision making. Normalization of one ethnic group has lead to the classification of other normal values (in both the laboratory and social sense) as pathological or inappropriate. In other words – you are only normal if you are white and normal. Neutrophil counts are often lower in black babies [9]. Rather than reporting ethnically normal ranges babies often end up having multiple blood tests due to a lack of awareness of the variation. Parents get told that their neutrophil count is low, but it’s acceptable for a black baby (rather than categorically stating that their count is normal). Worst still, it might be classified as a disease – benign ethnic neutropenia – despite not being associated with increased morbidity or mortality.

Within medical education, we are guilty of peddling irrelevant and outdated racial and religious stereotypes. These hold little educational value, but risk enforcing dangerous bias within our future doctors. Any paediatrician would be able to tell you about the association between Tay-Sachs disease and Ashkenazi heritage, or sickle cell disease and sub-Saharan Black Africans. Such associations are often over-simplified and over-emphasized, to the point of creating a disease-ridden caricature, particularly in exam questions. Most of these stereotyped conditions are very rare, and over-emphasis during medical school risks blinkering us to more common diagnoses. We’ll explore how racial bias is ingrained in medical education in the UK, and try to come up with some ideas on how we can improve MedEd to be more diverse and inclusive in the future. 

There also seems to be a disproportionate concern that those from Muslim backgrounds might be consanguineous, and that we need to ask about this even when it is not relevant to the presenting complaint. Conversely, when genetic testing is being sent off, a detailed family tree needs to be drawn. It should include details of any consanguinity – yet it seems that a white family is less likely to be asked. As first or second cousin marriages are no longer a social norm in the UK, they have become defined by pathological associations with genetic conditions, such as inborn errors of metabolism. And whilst there are, of course, differences in the prevalence of disease alleles in different populations, and an increased risk of recessive disorders in families with intergenerational consanguinity, it does not automatically follow that a child from a Muslim background has a recessive disorder, or that a white British child does not. The same considerations need to be given to other cultural practices that might be different to the social norms of Northern and Western Europe. Putting children on a vegetarian diet is often classed as a ‘restrictive diet’ – despite the fact that it is only restrictive based on traditional Western standards – and might, in fact, hold health benefits [10]. 

Finally, in our series, we will examine how systemic racism within the health service tolerates – and sometimes even facilitates –  the unacceptable behaviours demonstrated by some parents. One thing that sets paediatrics apart from adult medicine is that patients are almost never seen alone, and a parent is often required to deliver care. This can present a dilemma to staff when confronted with a racist parent. Any punishment directed towards the parents might directly harm their child. We will explore how guidelines should be developed to help clinicians handle racist parents, whilst minimizing the effect on the clinical care of our patients. 

It can be painful for us – as individuals and as a speciality – to consider that we might be complicit in a racist system that ultimately leads to poorer health outcomes for some children. Just because something is painful, does not mean we shouldn’t do it. We hope that you’ll join us for this series of short articles, as we try to explore how we can begin to move from a white-centric healthcare system to a child-centred one.

James Baldwin quote on racism

Selected references

1) The IFS Deaton Review. Are some ethnic groups more vulnerable to COVID-19 than others? 

2) Gardosi J, et al. (2013). Maternal and fetal risk factors for stillbirth: population-based study. BMJ 346:f108.

3) Kelly Y, et al. (2008). Why does birthweight vary among ethnic groups in the UK? Findings from the Millenium Cohort Study. Journal of Public Health, 31:131–137.

4) Aveyard P, et al (2002). The risk of preterm delivery in women of different ethnic groups. British Journal of Obstetrics and Gynaecology 109:894-899.

5) Asthma UK (2018) On the Edge: How inequality affects people with asthma. Available at www.asthma.org.uk

6) RCPCH (2020) State of Child Health: Diabetes. Available at www.rcpch.ac.uk

7) Plumb LA et al. (2021) Associations between Deprivation, Geographic Location, and Access to Pediatric Kidney Care in the United Kingdom. CJASN. 16:194-203.

8) Office for National Statistics (2020) Child poverty and education outcomes by ethnicity. Available at www.ons.gov.uk.

9) Haddy TB, Rana SR, Castro O. (1999) Benign ethnic neutropenia: what is a normal absolute neutrophil count? J Lab Clin Med. 133:15-22.

10) Kalhoff H. et al (2021) Vegetarian Diets in Children—Some Thoughts on Restricted Diets and Allergy. International Journal of Clinical Medicine. 12:43-60.

What’s in a name?

Cite this article as:
Alex Gibbs. What’s in a name?, Don't Forget the Bubbles, 2021. Available at:
https://doi.org/10.31440/DFTB.32037

Rightly or wrongly, stereotyping is engrained in physicians from when they start medical school. Consider the classic medical exam questions regarding a South Asian gentleman with a cough. Students are almost conditioned to start recalling their knowledge of tuberculosis before they have even finished reading the question. Stereotyping saves lives. Following Occam’s razor of common things being common means that a patient attending A&E with fever and hypotension is likely to receive potentially life-saving antibiotics even before rarer diagnoses have been excluded. However, one of the toughest skills of being a doctor is recognising when our conditioned stereotypes are hindering our ability to provide good care. 

Race and health are often linked. This might be to illustrate the varying prevalences of different diseases within different ethnic groups. Occasionally, treatment for a certain disease will vary by the patient’s ethnicity (such as choice of anti-hypertensive in the under 55s). Nevertheless, Covid-19 has demonstrated that not all generalisations based on race and disease are valid. In the first few weeks of the pandemic, when it was first realised that ethnic minorities in the UK and USA seemed to be much more likely to die from the disease, speculation regarding genetic susceptibility to the novel virus was rife. Yet ultimately, as is often the case, it appears that socio-economic factors, rather than genetics, explain these tragic differences. 

Yet sickle cell disease is one condition where there is undoubtedly a correlation between ethnicity and the likelihood of having the disease. Sickle cell disease (SCD) is caused by a mutation on the eleventh chromosome, affecting the gene that codes for one of the protein molecules in haemoglobin. The results of this mutation are abnormally ‘sickle-shaped’ red blood cells which cause an array of complications: from episodes of vaso-occlusive crisis (severe pain due to restricted blood flow to different parts of the body); strokes; anaemia and splenic infarction leading to infection susceptibility. The life expectancy of a baby born in the UK with sickle cell disease is less than 60 years. In order to have sickle cell disease, a child must inherit a mutated copy of the gene from each of their parents. Inheriting just one copy of the mutated gene has been shown to be protective against malarial infection. This selective advantage has meant that the sickle cell trait gene remains prevalent in areas of the world where malaria is endemic, most notably in Sub-Saharan Africa. Consequently, the vast majority of people with SCD are of African origin.

Until I began working as a doctor, I had only a biochemical view of sickle cell disease. I had learned about the genetics behind the disease and how these manifest as symptoms. However, as my medical school was in a predominantly white area of the UK, I encountered very few patients with SCD during my clinical placements. I did not regularly care for patients with sickle cell until I started to work in London, a couple of years after I had graduated from medical school. What struck me then was the negative attitude that some of my medical colleagues exhibited towards patients that we encountered with the disease. Patients with SCD most commonly presented to hospital complaining of severe pain due to vaso-occlusive crisis. Despite the clearly established pathology that explained their presentation, I found that many of my colleagues would question whether the patients were really in as much pain as they claimed. Strong analgesia would be prescribed reluctantly and often only after delay and discussion about ‘opioid seeking behaviour’. This is where I was first introduced to the term ‘sickler’.

A ‘sickler’ is a patient with sickle cell disease. It is often used in discussion between medical professionals as a faster way of saying ‘a patient with sickle cell disease’. Patients with SCD, like any other patient group with a chronic, incurable condition, can be difficult to manage. Seeing a patient return multiple times to A&E with the same complaint is frustrating for any clinician who takes satisfaction in curing their patient’s ailments. Sadly, SCD is something that cannot be ‘cured’. Patients have to live their lives knowing that the next painful vaso-occlusive crisis could occur at any moment. As is often the case with people who unfortunately have had to grow up in and out of hospital, a significant number of patients with SCD have behavioural or mental health issues that add to the challenges of managing their condition. Yet I did not see doctors show the same level of frustration towards patients suffering from other chronic conditions that often led to similar mental health problems; such as patients with type 1 diabetes, childhood cancers or inflammatory bowel disease.

In a 2013 study by Glassberg et al1, 655 Emergency Medicine physicians were surveyed on their use of the term ‘sickler’, their attitudes towards patients with SCD and the frequency with which the physicians adhered to evidence-based guidelines when providing analgesia to patients presenting in vaso-occlusive crisis. It was found that doctors using the term ‘sickler’ were more likely to harbour negative attitudes towards patients with SCD. 50% of the physicians surveyed admitted to using the term ‘sickler’ either “frequently” or “always”. Within the group of physicians who “frequently” used the term ‘sickler’, there was a statistically significant reduction in adherence to evidence-based guidelines when managing vaso-occlusive crisis pain, compared to those physicians who either “rarely” or “never” used the term ‘sickler’. A further study found a similar association; medical practitioners with negative attitudes towards individuals with SCD displayed lower adherence to treatment guidelines for managing vaso-occlusive crisis2. A 2010 study carried out in Chicago3 found that patients attending the emergency department in vaso-occlusive crisis were having to wait for an average of 80 minutes for analgesia, 30 minutes longer than the average wait time for patients presenting to the same department complaining of renal colic; despite the fact that patients in vaso-occlusive crisis reported higher average pain scores on arrival to the department than those with renal colic. In a 2020 survey of patients with SCD, two-thirds of respondents reported that they had delayed attending an emergency department for care during a vaso-occlusive crisis because of previous negative healthcare experiences and stigma around their disease4. However, it is not just on the ‘shop floor’ that these negative attitudes manifest. In 2007 Solomon5 reviewed a range of medical textbooks providing educational information about analgesic treatment regimes for patients in vaso-occlusive crisis. He found that less than 40% of the books sampled noted that opioid addiction was infrequent in this population of patients. However, over 90% of the textbooks reviewed offered such assurance when discussing treatment for cancer-related pain.

I associate the term ‘sickler’ with the frustration that healthcare professionals have towards managing patients with SCD. I do not use the term ‘sickler’ and am uncomfortable when I hear my colleagues use it. Tellingly, I have never heard a medical professional use the term ‘sickler’ in front of a patient with SCD.  When I consider the reasons behind why SCD patients are stereotyped in the way that they are by healthcare professionals, I can’t help but focus on the fact that most ‘sicklers’ are black. It is much easier for someone to empathise with a condition that they can relate to. I suggest that for predominantly white physicians with predominantly white middle class family and friendship groups, it is much more difficult to empathise with a condition that affects mainly black people than a disease that could occur to either themselves or a loved one.

After the Lockdown Summer of 2020, with the re-emergence of the ‘Black Lives Matter’ movement and the introduction of the term ‘unconscious bias’ into the mainstream, it is an apt time to discuss the dangers of using the term ‘sickler’. The term trivialises what is a severe and life-limiting genetic condition. It promotes the idea that patients presenting to A&E with severe pain in vaso-occlusive crisis are opioid seeking. This has led to patients receiving delayed or inadequate care. I know that most doctors I have worked with do not consider themselves as racist. Yet when we as medical professionals, consciously or subconsciously, act upon stereotypes that we have developed in our careers, to impact negatively upon patient care; then that is a form of racism. Whilst the term ‘sickler’ continues to be used amongst healthcare professionals, the stereotypes attached to the term will propagate through to future generations of doctors and medical students. It is not racist to feel frustration at a patient with sickle cell disease that is demanding treatment. However, it is racist to allow that frustration to impact upon the treatment that that patient, or the next one, receives. 

References

1. Glassberg, J., Tanabe, P., Richardson, L. & Debaun, M. Among emergency physicians, use of the term "Sickler" is associated with negative attitudes toward people with sickle cell disease. Am. J. Hematol. 88, 532–3 (2013).

2. Glassberg, J. A. et al. Emergency provider analgesic practices and attitudes toward patients with sickle cell disease. Ann. Emerg. Med. 62, 293-302.e10 (2013).

3. Lazio, M. P. et al. A comparison of analgesic management for emergency department patients with sickle cell disease and renal colic. Clin. J. Pain 26, 199–205 (2010).

4. Abdallah, K. et al. Emergency Department Utilization for Patients Living With Sickle Cell Disease: Psychosocial Predictors of Health Care Behaviors. Ann. Emerg. Med. 76, S56–S63 (2020).

5. Solomon, L. R. Treatment and prevention of pain due to vaso-occlusive crises in adults with sickle cell disease: an educational void. Blood 111, 997–1003 (2008).