New resources about end-of-life care for Aboriginal and Torres Strait Islander people will assist nurses and other health professionals begin the conversation in a culturally-safe way.

The Dying to Talk resources, developed as part of a collaboration between the Congress of Aboriginal and Torres Strait Islander Nurses and Midwives (CATSINaM) and Palliative Care Australia (PCA), has been designed to assist nurses and their patients discuss end-of-life - a special time in Aboriginal and Torres Strait Islander culture.

While all Aboriginal and Torres Strait Islander people have different end-of-life wishes, many prefer to return to country at the end of their lives.

CATSINaM CEO Janine Mohamed says the resource aims to ensure Aboriginal and Torres Strait Islander people can die with dignity and respect.

“Like many people, I have my own end-of-life experience. For my mum, she wasn’t even told that she was now on a palliative care regime,” Ms Mohamed says.

“I think some very big barriers around misconceptions of Aboriginal people and missed steps can really affect the care that a person receives and their ability to be involved in the decision-making.

“I think this in itself gives a step by step approach to being able to ensure that those steps aren’t missed, that people’s voices are privileged in their end-of-life, that people are treated respectfully, and, ultimately, die with respect.”

Ms Mohamed says the guide will help Aboriginal and Torres Strait Islander people to consider and voice their end-of-life care wishes.

“We know that Aboriginal and Torres Strait Islander people have a reluctance to engage in end-of-life health care and palliative care end-of-life services,” she says.

“That’s mainly due to past experiences of culturally inappropriate care that has caused psychological distress and unnecessary suffering for Aboriginal and Torres Strait Islander patients, and their families and carers, at a time that’s very vulnerable - where the clients themselves are probably feeling depressed and vulnerable with their diagnoses.

“But it’s also a culturally and spiritually significant time for many Aboriginal and Torres Strait Islander people as well, and if that’s not respected that only perpetuates the reluctance to engage.”

The resources feature a downloadable step by step Aboriginal and Torres Strait Islander Discussion Starter from the Dying to Talk website, which encourages patients to think about themselves and their family, consider their health care, prepare for talking about end-of-life care with family, friends or health professionals, and to review their discussion.

It also outlines a range of other planning activities, such as a preparing an advance care plan, organising a legal will, registering as an organ and tissue donor, planning for social media accounts, and planning a funeral.

Developed with the support of Indigenous Allied Health Australia and the Australian Indigenous Doctors’ Association, the resources also include a set of cards that can be used as a tool to start the conversations.

The resources will be distributed across the nation to Aboriginal Medical Services and Aboriginal Health Services.

Ms Mohamed says many Aboriginal and Torres Strait Islander people prefer to consult extensively with family about end-of-life care, and the resources will better prepare them to tackle the discussions.

“I think it’s an opportunity for the health care provider to also see the pace at which the client is working and why they are working at that pace, to ensure that there are no missed steps,” she says.

“Often, it’s a rushed process from our perspective, and decisions are made for the client, not with the client.

“It’s important the client is empowered in this very important decision-making time.


“There is no cookie-cutter approach. We are individuals and I think that’s one of the pitfalls we fall into thinking - that all Aboriginal and Torres Strait Islander people are all the same but we are not a homogenous culture.”

Ms Mohamed says health practitioners’ misconceptions about Aboriginal and Torres Strait Islander people can significantly affect the care of their Indigenous patients.

“Some of the things that we’ve heard from our members are comments made by health professionals, such as - Aboriginal people don’t feel pain the same way…and that my way is the right way,” she says.

“These are both barriers to not only the care that Aboriginal people receive but them engaging in the services ever again.”

Ms Mohamed says she hopes the resources will not only bridge the gap in conversation but build better relationships between health professionals and Aboriginal and Torres Strait Islander communities.

“So that community-based local approaches to end-of-life care, which are generally preferred, will then become a part of the health care system,” she says.

“It’s beginning conversations with individuals but we hope that individual nurses will think further beyond this resource and think about whole of services approaches to end-of-life care, as well as their own individual ongoing training, such as thinking about doing cultural safety training as well.”