In the throes of pain as she was dying at home, James’ wife, Fiona Murphy couldn’t get the specialist medical care she needed to alleviate her cancer pain for one reason: her pain didn’t fit into the system’s 8:30am to 5pm schedule.
Fiona died three weeks after being diagnosed with cancer in regional NSW and while she was able to access palliative care in her home during daylight before she died, it was unavailable outside office hours. Fiona’s husband, James, was by her side and administered every bit of pain relief he could, supporting her. At one point, he called an ambulance for help but paramedics too, were helpless because they had to wait for the palliative care team to be back on deck to ensure Fiona’s medication was at safe levels.
“It was freezing cold, middle of winter, so from about roughly 11 o’clock ‘til about sometimes six or seven o’clock in the morning she was just very agitated, very frustrated, in agony,” says James.
James and Fiona’s three adult children helped James during the day to nurse Fiona as her life came to an end. At nighttime, Fiona’s pain would worsen.
“The palliative care nurse said ‘if you get into too much trouble, just ring an ambulance’. And the two ambulance drivers turned up and they said ‘our hands are tied, we’ve got enough stuff in the ambulance to knock her out for a month but we can’t administer anything because she’s under palliative care and she’s got the pump on’,” James says.
“Well, I said ‘the nurses left all of that and you can read up all of what she’s on and what she’s got and everything else’ and he said ‘no we can’t do anything – all we can do is take her to Emergency and they’ll have to wait for palliative care, to get in touch with palliative care’, to find out what she’s on and what she’s not on. So … she could go down there for three or four hours and just be in an agitated state and no-one will look after her at all.”
James says that despite the palliative care service being restricted to office hours, one specialist nurse visited Fiona one night in her own time, to fix a tube she had pulled out of her body. James was given instruction as to how to administer pain relief but sometimes, the drugs didn’t work well or took hours to reduce Fiona’s distress.
“We were sort of left to our own wits,” says James.
“It was only two weeks prior to that date that palliative care was cut from a 24-hour operation to an 8:30 to five o’clock operation, so there was no one coming out of a night time,” he says.
"Fiona wasn’t too bad during the day. She was agitated and everything else but she wasn’t too bad of a daytime. The medication they gave her seemed to calm her down a bit but come about 11 o’clock at night, she just got all erratic.”
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.