“Don’t think there’s any such thing as palliative care here because there’s no money for it” are the words spoken by a nurse at a regional NSW hospital that stick in Ann’s mind when she remembers the death of her mother.
“I can remember the exact words,” says Ann, when recalling the conversation with a nurse overseeing patient care at the hospital where her mother passed away in 2014.
“I felt absolutely bereft … that was coming from the authority at the hospital,” says Ann.
Ann had spent three weeks by her 70 year old mother’s side when she was admitted to hospital with an infection and later died after several years living with cancer.
“I felt so very much alone and hopeless and helpless. All I could do was sit by Mum and be as supportive as I could and help her be as comfortable as she possibly could be, in the circumstances.”
Ann says her mother “made the most of whatever” throughout her life but continued to express her wish to return home from hospital, a wish she was unable to fulfil.
“Each day she would say ‘well we must be able to go home soon’. Her wish was to be at home. I’m not going to say that she wanted to go home to die or that she was saying ‘I want to die in my own home’ because she would not admit or accept the fact that she was dying. She just wanted to be at home.”
Ann was left to navigate the health system without direction while in distress as she tried to be her mother’s advocate. She says she tried to call a foundation operating in the local area that was helping support people with cancer but was told that once her mother was in hospital, there was nothing that could be done to get her back home. She just didn’t know who to approach for help.
Ann’s mother’s death was “not the ideal way to go” and was confronting for Ann because she was not given information about what to expect when her mother was nearing death – what her body would do and how she might be able to cope with it.
At the time of her mother’s death, Ann had left the hospital despite spending the bulk of her time there, by her mother’s side. Her absence at that time still causes Ann much grief.
“It was quite distressing (when her mother’s condition deteriorated),” she says.
“And the nurses said ‘we’ll call for family to come up’. I wasn’t thinking very rationally and I left the hospital. I’ve never been quite able to deal with leaving her alone.
” Ann says she will forever regret not being there at the time of her mother’s death but realises that it’s a situation many people must face.
“Wherever there’s a hospital, there will be people who will get into this situation, whether it’s just a tiny little hospital, you still need to have access to some palliative service.”
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.