When Mitch’s mum, Dianne, learned she would likely die as a result of metastasised breast cancer, her doctor told her she need not suffer pain. Dianne died in 2015 aged 69, six months after stopping active cancer treatment. In the end, her family says she was in dreadful pain that could have been prevented with better access to palliative care.
Dianne lived outside a large town in regional New South Wales. Her primary carer was her 72-year-old husband, Tony, assisted by family. They also had assistance from Dianne’s siblings who travelled from Sydney and her sister in-law, a retired nurse who travelled from Queensland, to help Dianne during the final stages of her life.
At the time of her death, there was just one palliative care specialist nurse who doubled as a trainer for other nurses in the wider regional area.
Dianne’s son Mitch says the lack of palliative care specialist health workers in the region is “atrocious”.
“There is virtually no palliative care in this area,” he says.
The nurse, who was also responsible for coordinating training for other medical professionals wanting to deliver palliative care in the area, was “running pillar to post with his role”, says Mitch.
“It was very much management in crisis”. “Plus, he had to look after all the region. So, he was the lonesome bloke trying to cover all of that, which is an enormous job when you’ve got 65,000 people.”
“I feel so dreadfully sorry for (the nurse) with his role because he deals with a lot of frustration,” Mitch says, adding that while the nurse wanted to be more available, he didn’t have such capacity.
Dianne was a former special education teacher who lived her life helping others and once she stopped treatment for the cancer, had expressed a desire to stay at home rather than die in hospital.
“Mum’s pain in her last month was atrocious,” says Mitch.
The impact of her pain was excruciating for her dedicated family, her main carers.
“Look, it was awful and the thing is you don’t want to see people in pain. One thing mum’s doctor in Sydney had said was “you do not have to be in pain” and he was very forthright in that,” says Mitch.
But at the end of Dianne’s life, in those final few weeks, “she was in an awful lot of pain” despite the earlier medical advice that it need not be so bad, says Mitch.
“I feel that we let Mum down in that respect – and we didn’t, but it’s one of those silly things you think about,” Mitch says.
“You can only work with the cards you have in front of you but the system let Mum down. As a society we work hard on preventing cruelty to animals but the system allows our loved ones to suffer horrendously. It is not right. People living in regional areas deserve better.”
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.