**Aboriginal and Torres Strait Islanders are warned that this article contains the names and images of someone now passed.
The Renal Society of Australasia (RSA) Conference was held in Darwin this year for the first time ever. Purple House left a mark on the event with our superstar Megan Neil winning best paper in two categories for her powerful presentation ‘Wiyarrinyi Ngurrangka/dying on country: working together for a good, safe death’.
The theme of the conference centred around equity in kidney care which Megan’s presentation addressed vividly by advocating for the importance of providing better access to palliative care on country. She emphasised that “Indigenous people are under-represented in palliative models of care”, noting that current models struggle to meet cultural needs and fail to take into account the challenges of staffing and limited resources in some of Australia’s most remote communities.
Megan unpacked the concept of helping patients have a good, safe death which involves doing things both culturally (good) and clinically (safe) the ‘right way’. This includes being able to die on country surrounded by family while also having access to adequate nursing care and medical equipment for pain releif and symptoms management. As she explained:
“what’s so unfair here – is that everything on both sides of these lists is important, but people are literally needing to choose between having a good death, or a safe one, instead of being able to have both.”
While the challenges of facilitating a good, safe death on country may make it seem impossible, Megan shared the story of the late Ms Miama (with permission from Ms Miama’s family) to show how it is in fact possible. In 2018, Purple House helped Pitjantjatjara woman Ms Miama return home to pass away. Miama came from Docker River, near the NT/WA border, and after years of advocating was the first patient to receive dialysis there when Purple House opened a renal unit in 2017.
“It makes me proud for you to be sharing her story. She used to write those letters, asking for renal in Docker River. She helped make that happen, not just for her, but she set it up for all of us. There are new ones getting sick, more people coming up for renal.” – Veronica Miama
Ms Miama’s daughter Veronica explained to Megan the importance of having her mother pass away surrounded by family on country, as in her final days:
“we were going to homelands with her, where her grandparents grew up. We were doing dancing, women’s law. All the grandkids were there, around her at aged care. They could come and go all the time. She was so happy to spend time with them.”
Megan concluded that while Miama’s story feels like a fairy tale ending, it should be possible for everyone to have a good, safe death on country if that’s what they want to do. Ms Miama’s story shouldn’t be the exception to the rule. Purple House are looking at ways of making palliative care more culturally appropriate and accessible in remote communities as everyone deserves the opportunity to have both a good and a safe death.