A cancer diagnosis and any mention of palliative care is troubling, but for Teena’s dad, Aboriginal community leader Frederick (Fred) Binge, extra hurdles that need not have been there, lay on his path.
When Fred was told by a doctor in 2013 that his liver cancer was terminal, while sitting on a bed, curtains pulled, in a packed regional NSW hospital ward with his daughter Teena, cultural sensitivities were absent.
“(The doctor) in the same breath said ‘you’ve got about three months to live’. Just like that,” says Teena.
“We sort of both just sat there stunned, in shock … and particularly for Indigenous people, a lot of that was … hard to take in because of the way it was delivered. There was no body language or sympathy that you could read or help prepare you for it.”
But any restraints or barriers in health care delivery were “because of the system, not because of the staff”, says Teena.
Palliative care can be a scary term for many Aboriginal people who may not be aware of what it means and how it can enhance life.
“When they mentioned palliative care, that was nearly as upsetting to Dad as telling him he was terminal,” says Teena. “He was like, thinking ‘I’ve only got a week to live’ and went back into the misconception, the myths told within community that once you’ve gone into palliative care, your journey will end very soon, and basically it’s a place where you go to die.”
Teena says such myths meant her father was at first resistant to palliative care but she just wanted him “to have some normality around a really not normal time”.
Teena persisted in convincing her father to talk to palliative care specialists and once he did, misconceptions eroded and they both tried to educate others about the facts.
“It was not just trying to alleviate any unfounded fears because of history and what’s been passed down and passed in community… but actually having to do that with a whole community, so that they can become a support for it, not tell him to not do it,” says Teena.
“That really pushed home to me how important it is for palliative care to get out to communities and tell them what they really do.”
The team was able to provide Fred with physical care and emotional care, which extended to his family as he was dying – two year after diagnosis – and afterwards.
“When he was very close to the end of his journey … they could talk to me about what I could organise for him to actually pass at home – what I needed to be aware of,” says Teena.
“(For) Aboriginal people, the fact you have to have police and ambulance come to pick up a body is distressing … (but) it can actually be an undertaker to do that if they pass at home.”
Without palliative care, Teena says Fred may not have had his wish to die at home fulfilled.
“They can support you and help you and in your darkest times – they’re like a shining light that can hold your hand and walk you through.”
When our loved ones are diagnosed with a terminal illness they deserve the best possible care and support. But, right now, that’s not always possible because there's a shortage of specialist palliative care in NSW. That’s just not good enough. We need the NSW Government to fund an additional 139 doctors and nurses and to meet the palliative care needs of Aboriginal communities.