"I'd rather go home and die": what Aboriginal patients say surgery feels like in the Northern Territory

Before the operation, the fear had already set in.

"They shouldn't go around telling [people], 'you need the surgery or you're going to die'," one Aboriginal man said.

"You're just really scaring them. I'd rather go home and die than stay and have surgery."

He made the comments during a yarning circle in Darwin — one of several held as part of a new qualitative study asking a simple question with difficult answers: what do Aboriginal people in the Northern Territory value during the operation journey?

Published this month in the Medical Journal of Australia, the research exposes a disconnect between how surgery is delivered and how it is experienced by Aboriginal patients, particularly those travelling from remote communities.

Hospitals tend to frame surgery as a technical process; consent forms, and checklists.

The people in this study described something else entirely. What they wanted was respect. Respect for family. Respect for culture. Respect in communication. And, from those things, trust.

Led by researchers from the Menzies School of Health Research and co-led by Aboriginal kidney health mentors across the NT, the study involved 18 Aboriginal participants with lived experience of surgery, many through dialysis and transplant journeys.

For them, surgery was never an individual decision.

"Not just about individual ... family has responsibility [in the process] ... check that everybody is on track about that operation," one participant said.

Family members were central throughout as decision-makers, and sources of cultural support.

"We have to talk first and make sure that my family understands," another participant said.

"That gives you the time and your family time to talk about it, it's a cultural thing before we make that next step."

However, participants described being moved through hospital systems that rarely recognised this collective model of care.

Families were excluded or left in the dark, particularly after surgery, when explanations were often given to no one at all.

"So when they come out of that operation, explain it to the family," one participant said. "If you want to have that trust — that patient trust — that family trust."

Many participants noted an absence of cultural respect.

One woman recalled bringing traditional food for a family member recovering from surgery.

"I brought her in a kangaroo tail, turtle and all the yam," she said.

"They got it, and they threw it in the bin. The nurse said, 'It is not lunch.' And that was not for them [to say]."

Others spoke about the importance of traditional healing, smoking, muttering or singing, and the guidance of Elders — practices they said were rarely supported.

"To make people's health better they have to feel comfortable," one participant said.

"Nobody said they can have a family member ... or get some of their own bushtucker brought in ... [this] makes connection with Country and makes healing."

Being separated from Country during surgery — often for weeks or months — was described as deeply distressing, compounding physical illness with spiritual harm.

Communication failures also emerged as one of the most damaging parts of the surgical experience.

Participants described being spoken to in technical language they did not understand, denied interpreters, or confronted with blunt warnings about death that shut down discussion rather than enabling consent.

"One doctor says this, and the next one says something different; lots of conflicting information," one participant said.

Another spoke about the emotional toll of not being heard.

"I get really upset ... because [doctors] think Aboriginal people are dumb, but they're not. They know what they're doing and saying ... they need to listen."

For people returning to remote communities after surgery, the risks intensified.

One participant described swimming across crocodile-infested waters during the wet season just to collect medication.

Others spoke of being discharged without clear instructions, follow-up or local support.

"Nobody told me what to do," one participant said. "No follow-up."

The study's central finding was clear, participants were yearning to trust medical institutions, but didn't feel they could.

"Aboriginal people frightened to come to hospital," one participant said. "I don't want them to open me ... I'd rather die than be cut open."

The researchers note the participants concerns are shaped by generations of racism, and culturally unsafe care; experiences that continue to surface in everyday encounters with the health system.

The findings arrive as Australia's health regulator has formally recognised culturally unsafe care as a breach of professional standards, allowing patients to make complaints against practitioners.

But participants were clear that policy alone will not fix what is broken.

"Doctors need to talk to us first," one Aboriginal co-researcher said. "With communication everything works better."