She’s 90, ill, and has dementia but she begs her daughters: “Don’t let me die.” They can’t understand why she hangs on so tenaciously. She’s suffering physically and mentally, and in the nursing home has little quality of life. But in her lucid moments she’s told her children: “There’s nothing there.” One of her daughters tells me: “My mother’s scared of dying.”
As a nation we don’t do dying well. There’s widespread failure to discuss death and to plan for it. The result is many people die in confusion and fear in a hospital or nursing home with chemotherapy drugs in their veins and tubes in their orifices. These days, many of us get adequate notice of our imminent demise. Two-thirds of us will die between 75 and 95, and those with advanced heart disease, advanced cancer or advanced age should know what’s coming. Yet many remain unprepared for the final stage, hoping that with another trip to the hospital, the doctors will figure it out.
An excellent, new report by the Grattan Institute called Dying Well shows that Australia is near the bottom of the table among advanced countries for dying at home. Most of us die in hospital. Only 14 per cent of Australians die at home compared to 30 per cent in the US, New Zealand, France and Ireland. Yet home is where 70 per cent of Australians say they want to die. We also have a poor record in making Advanced Care Directives, the written instructions about the end-of-life treatment we want. Over the next 25 years the number of people who’ll die each year will double, the report says. This will put huge pressure on the existing health system. But hopefully it may also increase the pressure to improve the quality of our dying.
I’ve always considered myself a realist about death. Like the dying mother in Debra Adelaide’s funny, poignant novel, The Household Guide to Dying, I’ve imagined myself, if faced with a dire prognosis, getting organised, and getting the family organised for life without me. Well maybe I wouldn’t buy my own coffin and get the family to paint it, or write a must-do list for a child’s possible future wedding as does the protagonist in the novel….But nor would I want prayer circles, miracle foods, or aggressive treatment. It’s easy to be pragmatic when the prognosis I have for my cancer is reasonably positive. If I really was facing imminent death I wonder how accepting and at peace I’d be. The famous palaeontologist Stephen Jay Gould, suffering a rare and lethal cancer, fought to the end, denouncing the “trendy” acceptance of death that equated it with dignity. I’ve known people in their 40s, 50s, and 60s who hoped till the end for the miracle, who hoped they’d be the outlier on the bell curve of cancer survivors. And maybe in the same circumstances, I’d be like them. I’d find it hard to let go.
The new report urges us to have more realistic conversations about the limits of medical care. One of the obstacles to a good death is that “We focus more on hopes for the next medical breakthrough than on the limits of health care when death is near,” it says. Doctors find it hard to talk about end-of-life: “As a result they can obfuscate about likely treatment outcomes and over-estimate the chances of recovery…Often treatment that is of little benefit is provided and (people) die in hospital rather than home.” In the US, 40 per cent of oncologists report offering treatments they believe are unlikely to work, according to Atul Gawande, a surgeon and staff writer for the New Yorker. What’s wrong with looking for the “long tail of possibility?” he asks. “Nothing unless we have failed to prepare for the outcome that’s vastly more probable.” Citing results from the US Coping with Cancer study, Gawande concludes that the terminal cancer patients who had substantive discussions with their doctors about their end-of-life preferences were “far more likely to die at peace and in control of their situation, and to spare their family anguish.”
The authors of the Grattan Institute report, Hal Swerissen and Stephen Duckett, believe we need a national advertising/public education campaign to promote a conversation about end-of-life, and to raise awareness of advanced care directives. But more than that, if we’re to reach New Zealand’s level of home deaths, we’ll need better funding of community-based palliative care services. As I’ve written in Dying at home meets reality, trying to fulfil a promise to a parent that they’ll die at home can prove impossible due to an absence of intensive home support services. The end days can be messy and hard. Where-ever we draw our last breath – whether home, hospital, nursing home or hospice – having specialist palliative care doctors and nurses who understand the limits of medicine is probably what matters most.
What’s also needed, according to former NSW palliative care physician Yvonne McMaster, now a campaigner for better services, is a new understanding of the word “palliative”. People associate it with the last days of life. They may recoil from it and refuse help. But now that people with terminal conditions may live for many years, palliative care can be needed from time to time for symptom control, to make plans, to talk. “It’s more about living well with a life-limiting illness than dying,” Dr McMaster said. It’s time to start that national conversation.
What’s your experience, your wishes? Please leave a comment.
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