Quarterly Essay 58 Blood Year: Terror and the Islamic State (17 page)

Peter Martin

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

If you know anyone likely to be facing death over the next few months, or at the point of moving into residential aged care, I would recommend against them reading Karen Hitchcock’s
Dear Life
. This caution is warranted. If they were to read it, they would be bombarded with an overwhelmingly distressing picture of poor care, careless doctors and unrelieved misery and suffering, with no available alternatives, unless they had the good fortune to be cared for by Dr Hitchcock herself.

Dr Hitchcock describes in detail a number of cases where older people have received less than optimal care in hospital, or poor care in a nursing home. I can’t challenge her experiences. It is important that she shines a light on bad practice. As a general physician in a busy hospital, she will see such cases of poor treatment and understandably they will frustrate and anger her. But this is not all there is. I am personally aware of many cases where hospital care for old people approaching death has been excellent, appropriate and appreciated by patients and families. I know of many peaceful deaths in hospitals, palliative care facilities and nursing homes. It is not all bad. All of us do not need to fear this stage of life, nor despair of receiving any comfort.

Dr Hitchcock properly draws attention to the inadequacies, which do leave too many people in worse circumstances than needs to be the case. But how is this to be remedied systemically? How do we change systems so that most of us can look forward to good and sensitive care in the final stages of our lives? It is possible. As a doctor, Hitchcock restates the inarguable case for more: more doctors for hospitals, more nurses and more hospital assistants for non-medical but important tasks, including feeding very frail individuals and keeping them company. I agree. As she implies, medical practitioners should be better trained to care for frail older people, and trained to recognise and counter ageism.

I agree as well with her challenge to the popular view that the documented massive growth in medical costs is not caused mainly by services for people in their final years. This view is an unhelpful exaggeration. An important finding in the recent Intergenerational Report was that the blowout of medical costs to revenue does not come mainly from older people receiving a lot of care as they approach death. Rather, these big expenditure increases are caused by the high cost of technologically sophisticated procedures such as MRIs, the higher costs of wages in the sector, and our higher standards of living and expectations. As more costly procedures are developed, more people of all ages want to use them. The public purse subsidises all of this.

It is a distressing fact that older people in hospital can be subjected to ageist attitudes and decisions. This is intolerable and must be changed. Ageism, an affront to human rights, is deeply rooted in our society and damages older people in all sorts of ways.

But it doesn’t start when you are ninety and rushed to hospital with a urinary-tract infection. It is closer to fifty when ageism impacts. It shuts capable people out of the workforce, and refuses them retraining to upgrade or change their skills. This discrimination leads to poverty and ill health. Manufacturers and retailers of most products and services target a market of exclusively younger people, reinforcing all the negative stereotypes about older people, and denying people realistic consumer choices about basics as well as quality-of-life goods. When our entire society views old age negatively, it is no surprise that doctors do too.

Housing that suits the needs of older people is scarce. New developments in areas convenient for community and medical facilities gain planning approval; such dwellings would in principle suit older people as they downsize, but thoughtless design and construction excludes them. Universal design is a concept waiting for implementation. It means that dwellings, community and commercial facilities should be built so that everyone can use them easily and safely, including people with mobility and other deficits from ageing or disability. Hospitals could do with a big injection of universal design too.

The provision of aged care is changing, for the better. The biggest change is that the bulk of new funded services will provide care in the home. If older people are to stay in their communities, these need to be safe, well lit, with clear signage and smooth footpaths and kerbs. Public transport becomes the necessary form of transport for older people no longer able to drive. Most of it in our big cities is not safe and accessible. In country towns it can be completely absent.

Those who can live in their community actively and with enjoyment into old age will be healthier and happier, better able to manage frailty when it arrives, and less likely to turn up as frequent visitors to emergency wards.

Those who have had the good sense to prepare an advanced care directive, setting out their wishes about limits of medical care should they lose decision-making capacity, have enhanced their own sense of security and independence. The advanced care directive should be helpful to the decision-making of medical staff, as it is to family members and close friends. I strongly support the use of advanced care directives and do not share Hitchcock’s reservations. She seems to imply a preference for a doctor’s decision replacing the patient’s documented wishes. I believe we are some time off reaching agreement about laws in Australia that would provide for euthanasia, or medically assisted death. A majority of our population is in favour of such a law. In principle, so am I. But the complexities of legalising the dying patient’s wishes while protecting frail older people from manipulation and abuse have so far proved too hard to surmount.

In the meantime, a carefully constructed directive, updated from time to time, but put in place while the author maintains decision-making capacity, is an effective way for the patient to have as much peace of mind and choice as the law currently allows. It is an important exercise of basic human rights.

What I am advocating – rather than just hoping for the rescue doctor to appear at the end – is dealing with ageism in all its forms, including in hospitals, by embedding a human rights approach in all our medical and associated services and institutions. We need to act to change systems and services so that they respect the human rights of all, including the old and frail. A human rights approach means dignity, respect and choice as far as possible, within the law. The advanced care directive, as I have noted, does this in relation to end-of-life care. So does palliative care, which provides comfort and dignity, and can be respectful of choices while accepting the circumstances of approaching death.

Our whole society should start thinking more deeply about the end of life, and about how we can change our values so that growing older leads to a time of life with its own rewards and satisfactions. The distressing picture of ageism, neglect and mistreatment presented by Dr Hitchcock is not the best we can do.

Susan Ryan

Dear Life
is described as “moving and controversial,” and this is certainly true. The essay is littered with wise observations. Karen Hitchcock comments succinctly on the morbidity of multi-prescribing (very common in the elderly) and the difficulties of prognostication (predicting outcomes). This is particularly difficult in the frail aged with multi-system disease; such situations can be likened to a “house of cards” – once one card is disturbed, the whole structure may come toppling down, seriatim.

Hitchcock illustrates her points with anecdotes relating to patients she has treated. They are very moving, but unfortunately too brief to allow critical assessment and analysis of the outcomes. Moreover, anecdotes are not evidence; they are merely carefully selected episodes to support an argument, and may be ignoring many other anecdotes. One could be critical and ask: where is the research evidence to support this thesis? This would be unfair, because there is almost no research done in this area, and there is an appalling lack of research as to what treatment or care the frail elderly want.