FormalPara Key Points

  • Supportive Care: “Into the Dreaming”—A guide for Aboriginal and Torres Islander people through “Sorry Business” supports respectful conversations about the end-of-life journey.

  • The booklet was produced by the Hunter New England Local Health District in Australia following a 12-month community consultation process.

  • It includes artwork, stories, and clear information about planning for the end of life and supports Aboriginal health workers in yarning with patients and their families during their cancer journey.

For health workers, starting conversations about end-of-life planning can be difficult—particularly in situations where patients or family members feel alienated or distrustful of the healthcare system.

Some years ago, health workers in Australia’s Hunter New England region realized that the local health district had no suitable resources to support end-of-life planning conversations with people from an Aboriginal and/or Torres Strait Islander background. A small group of health workers decided that needed to change. The result is a beautiful booklet: Supportive Care: “Into the Dreaming”—A guide for Aboriginal and Torres Islander people through “Sorry Business” (Fig. 25.1).

Fig. 25.1
A booklet cover titled supportive care into the dreaming. The upper part reads a palliative care guide for Aboriginal and Torres Strait Islander people through sorry business. The lower part presents the sponsors.

Supportive Care: “Into the Dreaming” booklet

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The booklet is designed to support sensitive, respectful, responsive, and appropriate ways of communicating with Aboriginal and Torres Strait Islander people about their end-of-life journey and Sorry Business. It aims to provide comfort to patients and their loved ones during a time of difficulty. It also aims to improve communication between Aboriginal and Torres Strait Islander patients, their families and carers, and their clinicians and health services.

Our Part of Australia

We are from the Hunter New England Local Health District—an area that covers 23 local government areas in New South Wales. Our district includes the large mining city of Newcastle, several large regional towns, and rural and remote communities. We have 27 hospitals, 43 community health clinics, and 12 palliative care facilities to serve a population of just under one million.

Our health district is on the traditional lands of the Kamilaroi, Gomilaroi, Gomeroi, Geawegal, Bahtabah, Thungutti, Awabakal, Aniawan, Biripi, Worimi, Nganyaywana, Wonnarua, Wanaruah, Banbai, Ngoorabul, Bundjalung, Yallaroi, and Darkinjung Nations. Around 7.5% of our population identify as Aboriginal and/or Torres Strait Islander (compared to the New South Wales state average of 2.9%). The health disparities experienced by the Aboriginal and Torres Strait Islander people living in our communities are similar to those experienced in other parts of Australia.

Why We Needed a Specific Resource

As health workers, we understood that our Aboriginal and Torres Strait Islander patients were not well prepared for their end-of-life journey. We noticed that our patients and their families had difficulty discussing their wishes. Many thought they didn’t need any end-of-life planning—often because they felt that things like wills and enduring power of attorney documents were only relevant for people who had property or wealth. They didn’t realize that end-of-life planning is about expressing their wishes and taking control of the final stages of life.

We were also aware that many Aboriginal and Torres Strait Islander people feel unsafe in the healthcare environment. Aboriginal people typically believe that hospital—and particularly palliative care—is where they go to die. They avoid going to hospital until they’re very unwell, because they don’t expect to ever leave. It’s a scary time for people, and as health workers we had no resources to help them navigate their journey.

Many Aboriginal people have no words to describe palliative care, and palliative care is not something they’re comfortable speaking about. It’s not a concept they understand, and they often don’t realize that good palliative care can make a huge difference to the quality of life they experience in their end-of-life journey. We wanted to encourage people to think more carefully about how palliative care could help them.

We also know that many of our people are not aware that they can make their own choices about healthcare. Some of our patients are members of the Stolen Generation: they were removed from their families when they were young, and grew up in an environment where they had no capacity to make choices. With that history, they don’t trust the health system and they don’t know that it’s OK to express their personal wishes—or that their wishes will be respected.

Consulting and Yarning to Get It Right

A team of health workers from our district developed Supportive Care: “Into the Dreaming” through a 12-month process of community yarning. Nearly 500 people participated in the community yarns. The team used yarning to learn from the community and to raise awareness about cancer, chronic disease, and palliative care. They spent time with people, giving them opportunities to ask questions and learn about the things that mattered to them.

When the team was finally ready to launch the booklet, they took it back to the communities and thanked them for their work. The communities own this information. As health workers, we’re the guardians of it and we share it with everyone, but the communities own it. The booklet reflects the things that are important to the people who helped to develop it. To us, it’s a community resource that we have the privilege of sharing.

The Resource

Supportive Care: “Into the Dreaming” is a 24-page booklet full of artwork, stories, and clear information about planning ahead. It’s a culturally safe, respectful resource that demonstrates an understanding of Aboriginal people’s values and beliefs and focuses on the things that are important to people during their cancer journey into the dreaming. We usually give it to patients as a hard-copy booklet, but we’ve also made it available online.Footnote 1

The development team invited local Aboriginal people to contribute their artworks and stories about Sorry Business, and they included nine of these in the booklet. The artworks and stories are ways of talking about the end of life. They express who we are as Indigenous people. By including them in the booklet, readers have something they can connect with and think about. The stories also help to explain how health workers can support people to live as well as possible for as long as they have left in their life journey.

The booklet provides information about how to plan for the future, including writing a will, advance care planning, enduring guardianship, and power of attorney. It explains why these things matter and provides simple steps for getting them done.

The center pages include an advance care planning form that patients can use to record their wishes. At the back, it provides the details of local organizations that provide support and help. It also has a pocket at the back so that patients and health workers can add extra information.

How We Use the Booklet

We’re aware that talking about Sorry Business can be confronting. Sometimes people don’t realize they’re approaching the end of their journey. When that happens, we can’t just give them the booklet. We need to get to know them first, then introduce the topic when the time is right.

We like to sit with people and yarn with them about what the booklet says (Fig. 25.2). Often we’ll leave it with them so they can think about the content and decide for themselves about what’s important. When they’re ready, we can help them to complete the advance care plan, if that’s what they want. Sometimes we’ll do multiple copies of the patient’s plan—enough so they can give one to all their family members whenever they’re ready.

Fig. 25.2
A photograph of Margaret Whitson with a patient. Both of them hold the supportive care booklet while having a conversation about the cancer journey.

Margaret Whitson and a patient yarning about the cancer journey. (Photo: L Garvey)

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We’re aware that many Aboriginal people don’t want to talk about dying. This booklet helps us to focus on preparing for the future. It embraces the idea that eventually everyone will pass on, and we need to prepare. It helps people to think about why they need to prepare culturally, and how they can have control. For many Aboriginal people, entering the dreaming is about preparing to meet our ancestors and meet our loved ones. The booklet helps to introduce a positive aspect into it, because we can plan our own dreaming.

The booklet is a way of helping people to think through their wishes and identify anything they’re really frightened about. It helps to open up conversations about something that many people find very difficult to discuss. They can put these things down in writing so that everyone understands their wishes. Having it in writing means they don’t need to keep saying it. And it means that when they can’t talk for themselves any more, their wishes are already recorded. It helps people to take care of themselves and feel more confident about what lies ahead.

In our communities, it’s usually important for Men’s Business and Women’s Business to be addressed separately. Our female health workers often can’t talk about Men’s Business. But we don’t have many male palliative care workers, and that can create difficulties. This booklet helps to bridge that gap. We can introduce the things that need to be discussed, then leave the resource with people for them to think about.

For some of our patients, the booklet becomes a precious thing. They carry it with them when they go to hospitals or other medical appointments. Sometimes families will keep it as a precious reminder of their loved one’s wishes.

Supportive Care: “Into the Dreaming” is a collaborative project produced by the Hunter New England Local Health District, Calvary Mater Newcastle, and MyNetCare. Thanks to the artists who shared their personal and traditional journeys and stories and the communities that participated in the cancer yarn ups.