DEAR LIFE

Response to Correspondence

Karen Hitchcock

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.

If the home-based palliative care, nursing and GP services Ian Maddocks describes were available in all regions, and if everyone had ready access to a few thousand dollars a week, then many more would be able to die at home. The choice would truly exist. And it would be a good thing.

We know what the goal of a hospital admission is: to get people well, if possible, and out of the hospital. What is the goal of a nursing home? To care for someone until they die. But what does “to care for someone” actually mean? Inga Clendinnen ignores my caveats and takes me to task on some of my comments about nursing homes. These comments are neither anecdote nor opinion. They are points of fact: there is a vast shortage of adequately trained staff, half of Australian aged-care residents are on psychotropic medications, direct sunshine on the face is rare. The average-sized nursing home has between 100 and 200 residents. Some house up to 400 people. Peaceful nursing-home deaths are possible, but only if staff are skilled and supported. In this way they are as much dependent on “determined nurses” – and an institution’s culture – as the hospital death of which I wrote. It is exactly as Clendinnen states: “The essence of the place comes down to a few nurses.” Not every place has such nurses.

If all nursing homes were like Clendinnen’s, no family would feel guilty and fewer people would be reluctant to enter them. Not everyone has a long list to choose from, nor the funds, wherewithal or discernment to choose; some must go to places to which (in the words of a social worker I know) “you wouldn’t send a stray dog.”

Clendinnen asks why my mother did not “raise Cain” about my great-aunt’s unclipped nails and soiled dressing-gown. One might just as well ask why the abused do not leave their abusers. Power, in the first instance. People fear retribution. But she did in fact complain. Repeatedly. What often happens when a complaint is lodged with an institution? It spurs a great chain of instant action: it is converted to words on a computer, emailed and reviewed; boxes are ticked; files are made; it is responded to “administrivially” – and nothing is changed. State authorities don’t have time to investigate the lack of podiatry services and intervene. They are dealing with suicide, assault, gross neglect and starvation. Read the literature, call the coroners, bless the oasis in which you live.

In highlighting the severe lack of community supports for those who wish to stay in their own home, I am not advocating that we “force women into cruel servitude” to care for their elderly relatives. What I seek is greater support for the many who do wish to remain at home; greater support for those who do wish to care for their parents; appreciation that this care is not merely a “cruel servitude” but can be a mutually valuable and meaningful act of love. We leave the world as we enter it – needing assistance. In some societies in the past, children were not named until they were five years old. They did not enter personhood until then, as the odds of living were stacked against them. Who are the anonymous now?

Clendinnen disagrees that we can at times ask for the opposite of what we wish for, and states that she wants to be obeyed when she decides she wants to die. And yet she tells us of exactly such a situation, and how the neurologist immediately agreed – no doubt indoctrinated to “respect patient choices.” This neurologist had no understanding that – as Komesaroff points out – “A statement supposedly rejecting a specific treatment might in reality be an expression of vulnerability, uncertainty and fear.” How lucky she was to have had another doctor, one who cared enough to do more than simply “respect her human rights” and obey her statement as if they were two computers communicating in an indisputable and unambiguous binary. He talked with her, listened to her, asked her to give him three weeks – which has enabled her to give us all so very much.

Susan Ryan attempts to reduce my essay to a kind of vanity project with me as hero. In contradistinction to this, she states: “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.” I can only conclude that she must not have read Dear Life. Her solution is to embed a human-rights approach in all services and institutions. Unfortunately, her description of a human-rights approach looks like more of the same: protocols and forms, directives and the instrumentalisation of human interaction. Dignity, respect and choice: a handful of catchphrases now empty of meaning and coopted into a rationalistic, bureaucratic, managerial approach to rationed “service provision” that always ends with how and when and by whose hand we will die. Our “human rights” appear to have shrunk to a signed sheet of paper that protects us from non-death. This is inaction disguised as action in the face of an entrenched and pervasive ageism.

I was lying in bed a few nights ago; it was late, I was semi-conscious, and an ambulance shot past, sirens blaring, pushing urgently through the night. And I started to think about ambulances and all they tell us about our community’s attitude towards life, towards health. An ambulance approaches and cars stop, people turn, the neighbourhood awakens, parents momentarily feel a slim wedge of terror. Someone wakes sick in the night and with a single phone call a state emergency vehicle is mobilised to bring them to a hospital all lit up and ready to receive them. Doctors will listen to their story, examine them, fix them or reassure them or alleviate their suffering. The hospital will receive them, no matter who they are. This – we believe – is a “human right.” And yet when Clendinnen called an ambulance for her husband, the paramedics “flatly refused to take him to hospital. I was incredulous; they were firm. So were the team I called the next day. Then it was the weekend, both sons were away, the ‘Doctor on Call’ had no power to do anything.” What a pity, Ryan might counter, that her husband had not acted on his “human right to have an advanced care directive.” It would have saved them the trip.

Karen Hitchcock