DEAR LIFE

Correspondence

Stephen Duckett

The vital message of Dear Life lies in its subtitle: On caring for the elderly. Hitchcock rightly points out that older people face discrimination in many ways. They are devalued and seen as a burden, and as a result get the rough end of the pineapple in health care. Partly as a consequence, many people come to accept the implicit message society sends them: they should accept whatever life (or death) deals them, and they are not entitled to have – let alone voice – their own choices about what they want from health care.

Hitchcock cites a number of anecdotes in which older people have succumbed to that dominating world view and been reluctant to articulate their own opinions about what type of care they want when help is needed.

Implicit in Hitchcock’s essay is a wider problem: an attack on the dignity of all humans. People are increasingly reduced to economic units, cogs in an economy rather than human participants in a society or community. The language often used in demographic analysis is telling. The ratio of people before working age (0–15) plus those above working age (65+) to the whole population is often described as “the dependency burden.” No wonder the older people Hitchcock talks about feel devalued, with their current and previous life-time contributions unrecognised.

Yet Hitchcock misses one important point. She tells stories from only one side of the way older people are disadvantaged; her stories are about people missing out on care that would help them hang on a bit longer. She feels that those people may not have been given that option without her intervention as a doctor. These are terrible and challenging stories that reflect poorly on the health system and show, yet again, how older people are not always treated with the dignity they deserve.

What Hitchcock doesn’t write about is how some older people get on a health conveyor belt and receive interventions that neither they nor their families and carers would seek if they had time to reflect and discuss. Her missing anecdotes are about the people who die with excessive intervention, those who die a slow and agonising death in the high-tech and frightening surrounds of a hospital. It is even worse when it prevents them from having any meaningful interactions with their families and other loved ones in those last few days.

As a society we are very bad at speaking of the inevitability of death. The health professions are very good at deferring death and alleviating pain, but much weaker at acknowledging that we all die sometime and somehow.

Dying Well, a recent Grattan Institute report cited by Hitchcock, of which I am a co-author, is about the “somehow.” What might a good death mean? Seventy per cent of Australians say they want to die at home, surrounded by loved ones and good services, but only 14 per cent are able to do so; the rest die in hospital or aged care. Each element in our package of recommendations is reasonable; together they represent a good policy aspiration. Yet in her essay Hitchcock derides our attempt as unrealistic and – worse – murderous: it is only achievable if we “put people down when they reach a predetermined age.”

We didn’t see it that way. We saw it as part of an attempt to get people to think about what they might want and to set a frame for policy. We know that good services can make the end-of-life experience better. A recent study showed that people receiving palliative care live longer than their peers who didn’t receive such care. Families of people who died with palliative-care support generally speak well of the care that was provided.

My anecdote is that shortly after we released our report, my mother died. Her death did not exhibit all the characteristics of a good death we outlined, but it was close enough. The treating doctor, by letting the family know that my mother was unlikely to survive her admission to hospital, allowed my daughter and me to visit her and in our way and hers to say our goodbyes while she was still able to interact with us. We were spared heroic interventions and saying goodbye to a comatose person with multiple tubes and no spark of the feistiness that defined her throughout her life, and indeed on her deathbed.

I am sure Hitchcock has a wealth of anecdotes about championing better deaths, about intervening to stop invasive and degrading treatments that are truly futile. The essay would have been stronger with those.

We need to get the balance right in discussions about death, in treatment and in policy. We need to start by giving primacy to the dignity of human beings, regardless of whether they are above some economistic, age-related cut-off of 80, 90 or 95 and hence deserving to be consigned to the economic scrap-heap. We need to listen carefully to the patient’s wishes and to make sure their decisions can be effected.

Hitchcock is right to ask whether some health professionals are too quick to discontinue curative treatment goals. But we must also remember the other side: many people want a death that looks more like the one we identified in Dying Well.

It’s a challenging path to walk, not holding out false hope, yet not cutting off hope too soon. Hitchcock’s diagnosis is that contemporary health care errs too much towards cutting off hope too soon. Our diagnosis is that we need to provide better infrastructure to allow people to make better choices about how they want to die and to have a better chance to put those choices into effect.

Her approach – and ours – is about listening to people and treating them with dignity and respect, no matter what their age.

Stephen Duckett