In the 21 hours before eight-year-old Amrita Varshini Lanka died in Melbourne, her parents experienced what felt like two “completely contrasting hospitals”.
There was the Monash children’s hospital in which they say Amrita’s difficulty breathing and her mother Satya Lanka’s pleas for more urgent care went unheeded. Then there was the Monash children’s hospital in which, 17 hours after she was first admitted, staff moved Amrita into a short-stay room in preparation to discharge her – only to realise her condition was critical.
“From 6am onwards I think there was a world-class hospital, everyone was trying to revive Amrita,” her father, Venkata Chandra Lanka, says. “But until then they let her die. Slowly and steadily.”
Chandra and Satya are currently in Visakhapatnam, on the coast of the Bay of Bengal, performing Hindu rituals for Amrita, who died on 30 April.
Along with unfathomable anguish, they remain filled with questions. Some may be answered in a review being undertaken by the hospital and the coroner. Was Amrita suffering from appendicitis, as the referring GP suspected and her parents “strongly believed”? Or the gastroenteritis hospital staff treated her for? Other questions, tragically, may never be completely answered. Chiefly: why did no one listen to Satya Lanka?
“Being a mum, I know there is something wrong with my daughter,” Satya says. “They should consider what parents are telling them.”
Amrita’s is not the only story of a child dying in hospital amid pleas from their parents for an escalation of care to capture headlines recently.
Last month, five-year-old Hiyaan Kapil died hours after being discharged from Logan hospital south of Brisbane. His father, Uttam Kapil, has said he pushed for Hiyaan to remain in care but his requests were refused.
Aishwarya Aswath Chavittupara was seven years old when she died of organ failure from a bacterial infection in Perth children’s hospital on 3 April 2021. Aishwarya waited in emergency for two hours to see a doctor, despite multiple requests for help from her parents for her to be seen.
Each of these cases has or is being subject to review and there is not one simple answer.
But several doctors have noted that all three occurred to families from the Indian subcontinent and spoke more broadly of a “deadly combination” of factors, including ethnicity and culture, that is being magnified in a healthcare system buckling under the immense pressure of the pandemic.
Venkata Chandra Lanka says he “did not see” racism in the hours before Amrita died.
“If there is a different kind of racism in the picture here, where no one says anything to you but your concerns are ignored, I don’t know,” Chandra says. “I’m not in the system.”
Some within the system, however, do see racism. Like Chandra says, it’s of a different kind.
Afraid of the very word
Melbourne-based obstetrician-gynaecologist Dr Nisha Khot says that, in general, people who work in healthcare are not overtly racist but “so much about ourselves happens at a subconscious level”.
“There is definitely unconscious bias that healthcare workers do seem to have against people of colour,” Khot says. “But, as with all preconceptions, they are so deeply ingrained that we don’t recognise it when we are interacting with patients at the coalface.”
The doctor has worked for 12 years in the Victorian public system and prior to that, a decade in the United Kingdom.
There, the stereotype that brown-skinned women complain more about pain is so widespread that it has a name – “Begum syndrome”, after a common south-Asian surname.
Another bias that plays out in her field of pregnancy and childbirth is that black women may be seen as better able to handle pain.
One who can attest to this, first-hand, is Sydney-based haematologist associate professor Nada Hamad.
During her first pregnancy, Hamad says her pain relief was dismissed when she was told: “You don’t need an epidural, your people are very good at childbearing.” When she was having trouble breastfeeding, Hamad was told not to worry, “black people’s milk comes in later”. Her daughter became “very dehydrated” after leaving hospital and had to be readmitted.
It wasn’t until several years later that Hamad suddenly realised how insidious these comments had been.
That moment came at a talk by a North American obstetrician who presented data which showed that black women’s obstetric healthcare outcomes were poorer “no matter what country you’re in: the UK, the US, Canada or Australia”.
Suddenly, Hamad realised her personal experience was shared “by millions of black women all around the world”.
But having lived and worked in North America, Europe, Australia and New Zealand, she notes in Australia a “reluctance to speak up” and a “fear people have of the word racism and racial injustice”.
“It’s an absolute fear that, I think, really puts us back in our ability to move this agenda forward and resolve some major, structural issues in our systems,” Hamad says, noting a lack of data on the issue compared to other nations.
One institution willing to tackle the subject is the Australian Human Rights Commission.
Race discrimination commissioner, Chin Tan, says systemic racism within the health sector is undermining access to services, diagnoses, treatment and care.
Individual healthcare workers “may be well intentioned”, Tan says, but “unconscious bias or a lack of cultural understanding and sensitivity” means people from culturally and linguistically diverse backgrounds are not always provided with appropriate care.
“When this is taken across the entire health system, it amounts to systemic racism,” Tan says.
“It means individual prejudices and institutional culture can go unchallenged. It also creates barriers that prevent some groups from accessing the care they need and can lead to avoidable deaths.”
As a starting point, Tan says, cultural safety training is essential for anyone working in emergency departments or diagnosing patients.
Monash Health says it provides all employees with ongoing cultural diversity, sensitivity, and recognising unconscious bias training and has a Community Advisory Committee to “proactively remove any barriers to care our community may face through initiatives such as interpreters and bicultural workers”.
While Western Australia’s Child and Adolescent Health Service says it has made “a concerted effort to place a multicultural lens across all that we do”. It says 22% of its workforce is ethnically diverse and training on cultural sensitivity and cultural safety is “a critical priority”.
Making their voices heard
Khot says there is “a deadly combination” of factors affecting her community, including that people from subcontinental India are less likely to be aggressive in asserting their needs, coming from a society where “hierarchy is very strong” and professional opinion is less likely to be challenged.
Amrita’s father say they were always respectful towards hospital staff despite repeatedly raising concerns.
“Some Aussies have told us: ‘you should have shouted at them, you should have banged the table’,” Chandra says.
To this day, he rejects that notion. His daughter was in the hands of medical professionals – “not electricians or plumbers’’. Amrita’s symptoms should have demanded she receive the care she needed to save her life without the need for “hue and cry”.
“People like us are very humble people, we are very soft,” Chandra says.
Over the last 14 months, Aishwarya Aswath Chavittupara’s parents have been fighting to expose the systemic flaws that led to their daughter’s death, even going on a hunger strike to force an external review into the case.
“When we lost our daughter we made it clear,” her father, Aswath Muraleedharan Chavittupara, says. “We want justice. Then we want change.”
This Wednesday, on Aishwarya’s birthday, her parents will meet the Western Australian health minister with plans to launch a foundation as a legacy to their daughter and a proposal to improve the healthcare system.
Publicly, Chavittupara’s focus has been largely on hospital numbers and morale. Reviews into Aishwarya’s death found “suboptimal” staff numbers and healthcare workers who were “demoralised” and “exhausted”, something not unique to Perth during the depths of a pandemic. Other recommendations included a review of cultural awareness for staff and a clear pathway for parents to escalate concerns.
But Chavittupara feels so strongly about “highlighting multiculturalism” in his mission to improve the healthcare system he is writing a song about it, one he hopes to translate into a number of the most commonly spoken languages in Australia, other than English.
“In Australia, now, we have a mixed culture,” he says. “Are we addressing all the races? Are we addressing the different nationalities? Because they all have different cultures when they come in and we need to accommodate them into our system.”
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