Providing culturally safe end of life care for Aboriginal and Torres Strait Islander children and young people

End of life discussions can be hard. This new support tool is designed to help initiate those sensitive discussions in a way that is culturally safe and holistic.

Culturally safe care for Aboriginal and Torres Strait Islander communities is an ongoing critical need in healthcare and especially so when it involves children and young people living with a life-limiting illness.

At the heart of providing culturally safe care is creating a space to hold challenging end-of-life discussions so that care can be planned in a way that honours the child and their loved ones’ choices, beliefs, and cultural needs. “The cultural and spiritual needs are so important to consider when delivering palliative care to Aboriginal and Torres Strait Islander children, young people and their families,” says Tanya Quinn, a proud Gamilaraay woman and an Aboriginal Health Worker in paediatric palliative care and chronic and complex needs at the Sydney Children’s Hospital Network.

“The connection to Country, connection to spirit, connection to community is integral in our culture,” Ms Quinn says.

“It is also critical to acknowledge the impacts of transgenerational trauma. Our mob has gone through so much trauma over hundreds of years that continues to be felt and passed through the generations.”

Sensitive communication is an important component in planning ahead. But how do we bring that to practice? The newly launched ‘Working Out What’s Right For Your Child’ discussion starter cards and the ‘Yarning Companion’ facilitator guide have been designed to support healthcare professionals start a conversation with Aboriginal and Torres Strait Islander families about end-of-life preferences for their child, or young person.

“These resources were inspired by and adapted from a more adult-focused series of discussion starters developed in 2017,” says Camilla Rowland, Chief Executive Officer, Palliative Care Australia (PCA). “In 2022, as part of the Paediatric Palliative Care National Action Plan Project, a group of health professionals from across Australia identified the need for a similar resource tailored to the specific needs that arise in the paediatric and adolescent, young adult context.”

With funding from the Australian Government Department of Health and Aged Care, a working group, which included paediatric and palliative care Aboriginal Health Practitioners, Aboriginal Health Workers, and Aboriginal Liaison Officers from urban and remote settings, came together to pursue the project.

Both the discussion starter cards and the facilitators’ guide complement each other. The cards feature specifically crafted statements that initiate respectful conversations and have been designed to be less intimidating than answering direct questions. Families and communities can select the cards that are most important to them, giving them more control in the healthcare conversation. The Yarning Companion, on the other hand, consists of guidelines that support health care providers to sensitively create space for these conversations.

Planning care for the time ahead, honours the preciousness of a child’s life highlighting to them that people and community around them, are there to support, love, and create moments of joy and connection. Importantly this process also invites the important cultural needs and rituals unique to this family or community to be known, respected and fulfilled.