Quarterly Essay 58 Blood Year: Terror and the Islamic State (20 page)

Australian health care is a mess. Karen Hitchcock calls it a system of tacked-together fragments, communicating poorly with each other. Its finances are in the hands of non-medical administrators owning separate responsibilities at various levels, and they focus on what can be counted, setting rules for what is allowed within balanced budgets. This infuriates clinicians who are trying to provide whatever is best for their patients, and who recognise “non-financial values” in health care that resist costing.

It is a situation for which there are no easy answers. There is an easy rhetoric, of course, illustrated in the recent statement of principles by the Aged Care Sector Committee of the Department of Social Services. The principles affirm consumer choice, the central importance of informal carers, and that care should be affordable, innovative, responsive to need and universally available. It is also proposed that care be “contestable,” meaning, I suppose, that the provision of care will be open to tender and competition, and represent value for money.

Formidable difficulties attend the implementation of those principles. What can be offered to an individual may depend on whether a “care package” is funded by the Commonwealth, the state or territory, or a private health fund; whether care is delivered in hospital or in a community setting of family medical practice, specialist clinic or aged-care facility; whether private insurance is available and with which health fund (none are great in helping with community care); and whether in an urban or rural location.

It is not uncommon for an older person with several chronic diseases – cardiac or respiratory conditions, diabetes, arthritis – to track around specialist clinics collecting opinions and prescriptions while complaining, “I don’t know who is looking after me.” It ought to be the GP, perhaps, but many GPs do not visit homes these days, nor are they attending aged-care facilities as much as is needed, and are constrained by the round of ten-minute consultations which is best for their practice’s overheads.

At one end of the spectrum of care is the impressive technology of the operating theatre and intensive care unit, which can replace organs and maintain life with extracorporeal oxygenation or circulation. With this sophistication, even elderly individuals facing imminent death from organ failure may be pulled back from the brink. Such an intervention may cost tens – perhaps hundreds – of thousands of dollars. So what is the life of an old person worth? What is it worth for a person facing death to have life extended by a month or two? These are questions frequently approached but rarely resolved, and if met with strict guidelines will arouse much disquiet in many situations.

Our culture has accepted a basic philosophy of growth; it invites us to seek more – more money, speed, power, life. Families are primed to embrace whatever technology can offer, even if it helps for only a brief time and at great cost. Who can say this is wrong? A short time of survival for a loved one may bring great cheer to a family. And if it seemed, looking back, to cause more hospitalisation and discomfort, still, the loved one “was a fighter” and “we did our best.”

Not uncommonly, patients themselves decide they wish to cease futile treatment, and we (doctors, nurses, family members) need to be ready to allow space for them to express this desire. Minister Plibersek again: “I was able to respect his decision to refuse further treatment . . . because he had told me so clearly that when the time came, I had to let him go.”

Prognosis is more art than science. When I am asked, “How long?” I reply that I do not guess, because I am always wrong, but suggest that it will become clearer as we proceed, and that our best approach will be to make the remaining time as comfortable and meaningful as possible. Each individual is different; there are no right answers. For the physician and care team it means maintaining regular oversight throughout the final journey.

My own octogenarian status makes me increasingly interested in “healthy ageing” with regular exercise to maintain mobility, intellectual stimulus to ward off dementia, social interaction to refresh personality. But unforeseen crises will occur. The current push for writing advanced care directives calls for each of us to be as specific as possible about the kind of care we will expect if facing major deterioration and inability to speak for ourselves. Such directives carry authority, but they are necessarily general and tentative, and should be just one component of a plan, shared with family, to chart a way through the potential deteriorations and isolations of old age. It is complex and uncharted country for each individual, difficult to travel alone. It needs context and help, but where to find it?

Where, in the complex mix of health care, is there ready access to sensible advice appropriate to individual needs and hopes? Not, I think, the 24-hour helpline, nor, always, the GP, whose willingness and ability to guide oldies through our care system is not what it once was. It is not the large hospital, either, focused on its own prowess and staffed by doctors who have worked only in hospitals and have little awareness of community health.

Aged-care facilities could fulfil a major role if they were encouraged to expand, serving their local elderly communities with comprehensive care and becoming, in effect, community hubs for such care. A hub will house a multidisciplinary medical practice, not as a way of further medicalising the inevitable shift towards death, but to give necessary support to all others who offer care in the local community. It will encourage healthy ageing (a gym, a pool, meeting rooms, teaching areas). It will support care in-house and also at home, offering early intervention and respite for episodes of deterioration, maintaining regular review of medications (many oldies are on far too many) and of advanced care directives. Specialists will be encouraged to hold regular clinics at the hub and enlarge their myopic focus; the response to complex crises will be coordinated. Continuing oversight and appropriate intervention will reduce referrals to hospital, and encourage dementia care and palliative care (including in the final days) in the home.

Such a hub will be “owned” by the local community, drawing on the support of council, service clubs, churches and schools. They will be proud of their hub, raise funds for it and volunteer to support its many activities. Staff will want to work in it; students will be pleased to learn in it; older persons in the community will be glad to be part of its activities and ready to accept care there when it becomes necessary.

Australia’s care of the aged needs a national summit, pulling in the disparate authorities and agencies. The aim will be to establish consensus and clarify a vision of how aged care might be made more cooperative, integrated, responsive and person-centred. That shared vision can guide and encourage new initiatives like the development of community hubs, and suspend redundant old ones. It will need to enter areas as diverse as political oversight, financial responsibility, health-force training, institutional architecture and deployment of staff, money and resources. To reach that consensus will not be easy, but its need becomes daily more urgent.

Ian Maddocks

I am grateful for these responses and agree with much of what the respondents have written. But I would like to point out their almost unrelenting focus on death. Death has come to consume our discussions of how we might improve the situation of the elderly. It is as if we look at an old person and see walking death.

Last week I met with a geriatrician, Professor Joseph Ibrahim, who wanted to discuss his ideas for collaborative research projects. He had just finished a coroner’s department report on premature death in nursing homes. “It receives little attention,” he said. “Few people think any death could be ‘premature’ once you’re in a nursing home. Those last months or years of a person’s life are more precious than we think and do have value.”

Leah Kaminsky states we must first examine our attitudes to mortality if we wish to “meaningfully discuss” the situation of the elderly. Forget talk of improving home, community, residential and hospital care; let’s start with death. She thinks death is becoming “the new black” for the younger generations and that this “rebranding” needs to continue. I would like to remind her that one is now more often than not elderly for decades. Death happens once – it takes seconds, hours or days – but what of all of that life before it? We speak of caring for people who are old and find ourselves concentrating on their last breath, mesmerised (as Paul Komesaroff points out) by our attempts to tame, purify, reduce and regulate death.

To Rodney Syme, I have mocked the concept of a good death. To Stephen Duckett, I have called the rules for a good death “murderous.” My intention was not to mock a good death or charge it with murder, but to point out that we have found ourselves in a situation where our focus, and much of our resource and activism to improve the treatment of the elderly, neglects their life; the longer, greater, more important fraction of old age. There are many types of suffering, there are many ways to intervene, but to the many sufferings of old age our first and loudest response has become death: a good death, of course, but still death.

Syme claims that an “acceptance of death is a prerequisite to a good death.” If this is so, then I fear few of us will have a good death. Who is demanding we welcome and embrace our own demise? Who puts forward this simplistic and trivialising idea, as if death is just another stage of life – wean, menstruate, lactate, retire, hobble, recline, die – as if humanity has not struggled with the mystery, wonder and terror of non-existence for many thousands of years? Doctors, it seems, have discovered the key. We can now burn millions of pages of philosophy, theology and literature; ignore the work of those great writers and thinkers who have come before us. We rage against death from the moment we come into the world screaming for air and milk; our nervous and endocrine systems are primed for our flight from danger; we chew off our arm when it is trapped between boulders. We bolt through our lives in a race against death; it always wins, but this is no reason to concede happily. Often those who welcome death, who run to it with open arms as prescribed, do so from a state of abject despair.

Syme claims that there is an “appalling lack of research into what treatment or care the frail elderly want.” This only highlights medicine’s appalling belief in the omnipotence of quantitative evidence. What on earth would be the form or utility of such research? The frail elderly are not a homogenous group, not in their physical presentation nor in their desire for treatment. We have “evidence” in abundance: it is before us each and every day and must be gathered from and applied to each individual, one by one. There is no “group want” around which we could eagerly construct a beloved protocol – unless we were to construct one and promote it like an item of propaganda, so that it does indeed become a group want. The evidence he seeks can only be gathered case-by-case – by exploring each person’s needs and desires for treatment in their specific and intricate context. If this were not the case, robots could run the hospital, administering evidence-based “care.”

Of the complex clinical situations of my patients Eric and George, Syme advises me that the decision might have been easier if I had asked them what they wanted. Perhaps I did not make it sufficiently clear: both patients were delirious to the point of being
unable to speak
. And if by “ask them” he is referring to a previously drafted advanced care directive, this would of course have been one of the many pieces of information I gathered to formulate a clinical decision. It is highly unlikely that George would have documented his opinion on a future situation in which he found himself bradycardic and (perhaps as a result of this) fatigued and low of mood, slowly settling into a change of residence and with a treatable infection that rendered him unable to proffer his opinion on whether or not he wanted a pacemaker.

Such a document – championed as the answer to every lack in our system of caring for the elderly – can only ever be one piece of the many pieces of information available to a doctor when faced with a difficult decision. Our default position as doctors should be to treat: when such treatment is not refused, is not contraindicated, is resourced and will not clearly cause torture or clearly have no effect. As in the legal system, where we err on the side of innocence and prefer ten guilty men be free than one man be jailed inappropriately, I would rather ten get a trial of treatment (with the above caveats in mind) than one person die unnecessarily. There is a widespread belief that doctors can guarantee outcomes. We cannot. We operate more often than not in grey zones and often do not know that a treatment is futile until the patient dies. Which is why the intensivists – the ones called to the wards when a patient deteriorates, the ones present when the decision is made to withdraw the trial of treatment – may get a distorted picture of what it is we are doing on our wards. Most of our patients do not need their emergency responses – most of them get better and go home.

Is this unswerving focus on death when we speak of the old not the clearest indication of our society’s unconscious desire (as Jack Kirszenblat states) “to be rid of them”? If only the zealots who promote mandatory advanced care directives, and teach doctors to withdraw treatment kindly in a five-step “communication,” spent as much time and resource on teaching them how to improve a person’s life; that someone’s last years have great value; that someone old is still a named individual; that we should interrogate our prejudices.

I agree with Duckett that “we need to get the balance right in our discussions about death.” He thinks I should have provided stories about those “who die with excessive intervention, those who die a slow and agonising death in the high-tech and frightening surrounds of a hospital.” I did not write
Dear Life
as a textbook of every possibility. The literature is full to bursting with horrific depictions of such situations, to the point that one is led to believe an agonising high-tech death is the fate of every old person setting foot in a hospital. The discussion has not been at all balanced. I wrote this essay to provide the very balance to the discourse that he requests. We have excellent palliative-care services in most hospitals today. Slow, agonising deaths are not the norm, are not acceptable and are not common. And they receive too great a portion of our attention, leading to a lack of attention on improving the care we give the living. We must balance this obsession with death – as if death is the only outcome we have in mind when we treat someone old – with a discussion on improving
life
. Improving care has become improving death. We can do this only if we interrogate our belief – proved by our actions and our inactions – that the last years of life have little value.