Introduction by Croakey: Wide-ranging suggestions for improving cancer care and outcomes for Aboriginal and Torres Strait Islander people emerged from a panel discussion at the recent Australian Society of Medical Imaging and Radiation Therapy (ASMIRT) conference.
Marie McInerney attended the conference, which was held in Darwin on Larrakia Country, for the Croakey Conference News Service.
Marie McInerney writes:
Improving Aboriginal and Torres Strait Islander peoples’ experiences of cancer care and treatment outcomes requires determined efforts across health systems to improve communication and build trust, a medical radiation sciences conference has been told.
Health professionals and systems must also develop their understanding of the cultural determinants of health, and embed cultural safety in their work, the recent Australian Society of Medical Imaging and Radiation Therapy (ASMIRT) conference was told.
#ASMIRT2024 hosted a panel discussion around a hypothetical patient called Henry from a remote Northern Territory community, exploring optimal cancer care pathways for Aboriginal and Torres Strait Islander patients and the factors contributing to poorer cancer outcomes.
Panel members included patient advocate Desmond Mayo, who spoke of his treatment and recovery from throat cancer, and staff from the Royal Darwin Hospital’s Alan Walker Cancer Care Centre — his nephew Philip Mayo, an Aboriginal Liaison Officer, Giam Kar, Practice Manager and Chief Radiation Therapist, and Caroline McCarthy, Cancer Care Coordinator, as well as leading Indigenous cancer researcher Professor Gail Garvey.
Garvey, a Kamilaroi woman, is Professor of Indigenous Health Research in the Faculty of Medicine at the University of Queensland and has worked for many years with the Alan Walker Cancer Care Centre in Darwin.
Opening her #ASMIRT2024 presentation, she introduced her cultural and Country connections, explaining how important they are for Aboriginal and Torres Strait Islander people.
“And that is exactly the case when they come and see you in the hospital system,” she told the audience of radiographers, sonographers, radiation therapists and nuclear medicine practitioners. “How do you embrace and support who they are as Aboriginal and Torres Strait Islander peoples and where they come from?” she asked.
Garvey told #ASMIRT2024 that Aboriginal and Torres Strait Islander people experience cancer inequity “at every point of the cancer continuum from aetiology through to end-of-life care”, caused by a range of factors including politics and policies (see slide below).
These inequities are cumulative and result in substantially higher mortality rates compared to non-Indigenous Australians, she said.
The disparity in cancer outcomes is particularly wide in the NT, said Giam Kar, who is Executive Director of NT Radiation Oncology.
Communication matters
Garvey has been instrumental in promoting First Nations expertise and knowledge in cancer advocacy, research, prevention and treatment through a series of World Cancer Conferences. At the Third World Indigenous Cancer Conference, held recently in Melbourne, she stressed the importance of “fighting for self-determination, for our health rights, for our cultural rights, for the rights to be treated fairly and not be discriminated against”. (See Croakey’s coverage of #WICC2024 here.)
Garvey told #ASMIRT2024 that if there was one thing she could change, in the whole system of engaging on health with Aboriginal and Torres Strait Islander people, it would be communication – for the patient, the patient’s family and support, and for clinicians.
There is currently limited data around health literacy and Aboriginal and Torres Strait Islander people and their experience and understanding, particularly about radiation therapy, she said.
However, studies of the general Australian population show about 60 percent of adults lack basic health literacy and about 80 percent of patients referred to radiation oncology say they have little knowledge about what it is and what to expect, which can stop them engaging with treatment.
Garvey has been involved in a small study with 30 Aboriginal and Torres Strait Islander participants at three regional cancer centres (Darwin, Townsville and Cairns), the first to have examined the impact of radiation therapy education sessions on the knowledge gaps, concerns and support needs of Aboriginal and Torres Strait Islander people with cancer.
While the results are still preliminary and nuanced, the sessions resulted in improved knowledge and reduced concerns, she said.
Garvey has also been leading the 4Cs program: Communication and Collaboration in Cancer Care for Aboriginal and Torres Strait Islander People, which has produced e-learning modules focused on improving communication skills of health professionals, and particularly people working in radiation therapy and radiation oncology.
The modules provide advice on creating safe and culturally sensitive environments, including, for example, the value of silence, when it is used to deeply listen, show respect or show consensus. “A lot of people don’t understand the importance of silence in the context of communication with the Aboriginal and Torres Strait Islander patients,” she said.
The modules were trialled with 32 health professionals from cancer centres in Darwin, Cairns and Townsville, with promising preliminary results, she said.
Garvey also pointed to research by colleagues who investigated the successful strategies of 23 health professionals (medical and radiation oncologists, oncology nurses and Aboriginal Health Workers), and identified six key themes that are important to communication in cancer and its treatment with Aboriginal and Torres Strait Islander people.
Congratulating #ASMIRT2024 for having a strong focus on Aboriginal and Torres Strait Islander people’s experiences in cancer, Garvey urged delegates to also undertake the modules (which are free, here) and to check Cancer Australia’s Our Mob and Cancer.
“We know that clinician and patient communication can significantly influence a patient’s healthcare experience,” she said. “[Poor communication] can result in reduced treatment uptake and also completion, which then results in poorer health outcomes.”
Support is crucial
The panel discussed the importance of support for Aboriginal and Torres Strait Islander people with cancer, to keep them culturally strong and help them navigate a complex health system.
For Desmond Mayo, who was diagnosed after seeing a doctor about a cough, support from his family was critical, particularly in translating health information into lay terms.
“I’m 79 now,” he said. “Growing up in the old days we didn’t know about cancer, the only thing we knew about what leprosy so it’s very important to have someone with you who’s got a bit of knowledge on cancer.”
He says he was lucky, because he lives in Darwin so could remain at home and with family through chemotherapy, and because presenting early with a cough to a responsive and informed doctor ensured he got an early diagnosis.
“I got it in the early stages, treatment was done over eight weeks, finishing 15 months ago, and I’ve come out fine,” he told Croakey.
For patients from outside Darwin, Kar said the Royal Darwin Hospital seeks to engage an Aboriginal Health Worker (AHW) as a support person as early as possible, even when cancer is still just a suspicion. Sometimes patients are too scared to ask what they don’t know, or don’t know what questions to ask, he said.
But he said the AHWs don’t just provide cultural and clinical support to patients. They are also critical to the hospital providing safe, informed care, particularly given the NT has many transient and junior doctors who “may not have culturally safe practices, or don’t understand Aboriginal culture yet”.
The best way for services to be culturally safe, Philip Mayo said, is through roles like his own, especially given that 70 percent of patients seen at the Royal Darwin Hospital are Indigenous.
But Aboriginal and Torres Strait Islander health workers are thin on the ground in cancer care, with AHPRA figures showing they make up less than one percent of the medical radiation sciences profession.
Garvey said she understands there are no Aboriginal and Torres Strait Islander radiation or medical oncologists, and just a few working in radiation therapy. While cancer centres in Darwin, Cairns and Townsville have Aboriginal Liaison Officers or AHWs, most other cancer services don’t, she said.
Barriers to care-seeking
The panel discussed a range of reasons why Aboriginal and Torres Strait Islander people from remote communities might present late to a doctor or clinic with cancer-related symptoms or not engage with treatment, including lack of access to a GP or specialist and lack of cultural safety.
Philip Mayo said a diagnosis or treatment of cancer often takes a back seat for his patients, particularly those from remote communities, because there are so many other issues they are dealing with — including, for most, wanting to get back home as soon as possible.
“Cancer is not their priority,” he said. “As rough as it sounds, sometimes cancer is just another thing (for them) to put in the shopping cart.
“You’re looking at a cohort of people [who are] very family centred, everything revolves around family and culture,” he said.
“They’re worried about where their money is coming from, family commitments they have, [so we are] working around those issues to get engagement and get them to understand cancer along the way,” he later told Croakey.
Mayo urged greater investment in interpreters so Aboriginal and Torres Strait Islander people can discuss their needs in Language, and more flexibility in the remote patient travel allowance to keep them connected to community as much as possible.
“We’ve had a family member who was supposed to be here for months and it’s turned out to be for a year-and-a-half now,” he said.
Garvey said there can also be a real lack of understanding about what screening and x-rays involve, with many Aboriginal and Torres Strait Islander people not participating in screening because they worry it’s an ‘identifier’ for cancer, rather than early detection or prevention, particularly when there are no symptoms.
Other barriers to seeking care include fear and shame, where in some communities cancer can be seen as involving ‘payback’ or not being strong enough in culture.
Others might disengage after they’ve begun chemotherapy or other treatment, Desmond Mayo said: “Some will say ‘bugger this, it’s made me sicker than I was before’. They don’t know it’s part of the healing process.”
Treatment
Kar told the session that the Alan Walker Cancer Care Centre has a very quick turnaround from diagnosis to treatment time, not only because of strong processes but because later presentation can mean the patient needs treatment “as soon as possible”.
Cancer Care Coordinator Caroline McCarthy talked about the processes involved, and how having been based at the hospital for 14 years meant she had good relationships with staff across disciplines, so that “when people see me come in, they know that it needs to be done quickly,” she said. “At the end of the day I’m a strong advocate for my patient.”
Royal Darwin Hospital makes a big effort to enable Aboriginal and Torres Strait Islander patients to go home to remote communities between diagnosis and the beginning of treatment, understanding how important it is for them to not be suddenly whisked away indefinitely.
Concern about keeping people away from Country can guide treatment plans at Alan Walker, Kar said. The hospital might shorten the course of treatment or opt for “consolidation instead of radical treatment”, understanding that the best outcome for the patient has to involve cultural as well as clinical considerations.
However, the hospital also seeks to keep remote patients in Darwin for at least two weeks after treatment finishes, because many remote communities cannot provide enough post-treatment support.
If people are discharged too early, they often end up returning to the hospital via the emergency department, McCarthy said.
Survivorship
Garvey said she was recently at a cancer forum in Queensland that highlighted the importance of continuity of care. Indigenous patients reported that they felt they had no support once active treatment stopped, and community controlled primary healthcare services said they were not being updated on what was happening for the patient.
Providing better ‘survivorship support’ is the focus of the Australian Cancer Plan and other strategies going forward, she said.
However, many knowledge gaps remain.
“We don’t really know for Aboriginal and Torres Strait Islander people, what they need after their active treatment and engagement in cancer care ends?” Garvey said.
“What survivorship plans and support do they need going forward? There’s a big gap in knowledge.”
Kar and McCarthy said the Royal Darwin Hospital works at providing a strong ‘handover’ to community health services, through telehealth conversations and multidisciplinary support for GPs with complex patients, along with informal supports.
It has also set up the promising Borroloola Cancer Project, 1,000 kilometres from Darwin, which has employed a trusted community member to act as a cancer navigator.
Trust is key
The panel heard that negative stories about healthcare spread around remote communities “like wildfire”, born of a lack of trust in health services after harmful past experiences, which is why cultural safety and an understanding of the cultural determinants of health are critical, Kar said.
“The message is, you have to build trust,” Kar said.
“We get a lot of things done when you can get people to trust you, trust the system, trust the organisation, trust the staff,” he said.
“If you don’t have trust, none of this will be achievable.”
More take home messages for improving care
Watch this interview with
Bookmark this link to follow Croakey Conference News Service coverage, check the conference news on X/Twitter at #ASMIRT2024 and via this X/Twitter list of presenters and participants.
