Palliative care skills that would end life with dignity are sadly missing in many of Australia’s healthcare facilities. Photo: File.
We lost Mum two weeks ago. She was 93 and lived a long, rich life on the family farm before moving to an aged care facility in town as her memory faded.
She’d always been healthy. She ate well, gardened and walked everywhere and, ironically, at the end, had nothing to take her away except old age and a gentle shutting down as we sat with her.
Her lips moved in prayer and she reached for our hands, recognising voices and faces. Her dearest wish was to go home, to the huge skies and soft rustling of the wind across the plains.
Mum was not in pain. She was uncomfortable and frail, moving restlessly but sleeping peacefully.
But as her end neared, we were told, repeatedly, that morphine was ready whenever we needed it. It seemed, as my husband remarked, a very big leap from Panadol.
I made it clear we were not in denial about Mum’s impending death, and if that step were necessary, we’d take it. But Mum wouldn’t have wanted heavy-duty painkillers, and there were no clinical indicators. The suggestions kept coming.
Our longtime family doctor finally asked the staff to respect our family’s observations and wishes. She explained that many people at this stage are suffering from terminal cancer, so administering morphine becomes common, perhaps even routine.
Nursing homes have a difficult task at the best of times. Finding skilled staff has become almost impossible. Many rely on agency employees, and costs are prohibitive, especially in the regions where accommodations need to be factored in. On the South West Slopes, staff frequently come from Canberra, Orange or even further afield, and few have palliative care experience or qualifications.
We were grateful for those who knew where Mum was from, remembered her family and talked to her about home. But dying isn’t a one-size-fits-all process. Let her be, I wanted to say. She’s 93, just let her go on her own terms.
I’ve spoken since to several people who’ve had almost identical experiences and to someone with the opposite story, of a friend’s parent who actively wanted voluntary assisted dying but couldn’t access it. The hospital expressed anxiety about his decision-making capacity despite him making his wishes perfectly clear to his family well in advance.
Palliative care is a skilled discipline, and if you’re anywhere but a major city centre, it’s in very short supply. The Australia and New Zealand Society of Palliative Medicine (ANZSPM) says it’s a crisis for the seven million Australians who live outside major cities, and only 16 per cent of the specialist palliative medicine workforce are in rural and regional areas.
Nursing homes and hospitals are surprisingly unlikely to have staff with palliative care skills, despite the recommendations of the Aged Care Royal Commission. They’re doing their best, but under pressure, there’s a risk that death becomes a process.
Palliative Care Australia says more than 60 per cent of people dying from predictable causes have no access to any palliative care, no matter where they live. Comedian Jean Kittson, the national patron of Palliative Care Australia, has spoken about the distressing deaths of both her parents and is calling for national change.
Dying, like giving birth, is more than a medical procedure. Reducing it to the most efficient set of workforce variables hurts everyone, including patients and distressed families.
Dignity in death is much more than allowing voluntary assisted dying. It’s about respecting the whole person, and as the baby boomer population bump ages, it will become more and more critical that we extend a basic right to all Australians no matter where they live or who they are.
Mum slipped away very quietly in the end. We held her funeral in the little wooden church she attended all her life, where an overflowing crowd stood beneath trees she’d planted. We buried her in the Bimbi Cemetery where her sisters and brothers, parents and grandparents also lie, and the Weddin Mountains make a long blue line against the horizon.
At the end, I said to her it was getting very late. A million stars embroidered the night sky and the frogs were calling in the creek. It was time to go home.
Genevieve Jacobs is the CEO of Hands Across Canberra, the ACT’s community foundation.
