Quarterly Essay 58 Blood Year: Terror and the Islamic State (18 page)

Many of the anecdotes are intriguing – to my mind they both support and deny the thesis. Some are just examples of very bad medicine practised by junior doctors. One of Hitchcock’s early experiences is with Eric, in and out of hospital regularly with heart failure because he would not comply with his treatment. Hitchcock discusses further treatment with his wife, not with him, and reaches the difficult decision to stop treatment. The decision might have been easier if she had asked him. This theme recurs with George, admitted from a nursing home with a treatable chest infection, and a slow pulse, for which it was suggested he might need a pacemaker. Although he had mild cognitive impairment, which would not necessarily prevent him making decisions, his daughter was asked for the definitive opinion; the pacemaker was placed, despite his son-in-law stating that George had often indicated that he wished he were dead, an opinion the daughter had not heard. Regrettably, people do not always communicate effectively, and are not encouraged to do so.

A critically important story is that of Fred, recently bereaved of his wife and his dog, who was sent to hospital against his wish by his GP, with respiratory problems. Fred wanted to die. Hitchcock sat down and talked with him. She arranged to get him a new dog, and to find local spots where he could fish. She supported him, and he went home, rejuvenated. Fantastic treatment, and based on communication and dialogue, a very inexpensive form of medicine – except that it takes time.

And this, to me, is the missed opportunity of this essay. Hitchcock was dealing, as a hospital physician, with many problems that might have been easier if there had been good prior communication on the part of the GP: discussing with frail patients, and patients with potentially terminal illnesses, what treatment they wanted, and providing them with the reassurance that refusal of treatment would be met by effective palliation. In the absence of clear refusal of treatment, the default position of the medical profession is to treat, and such treatment may well be unwanted and futile. Nursing-home patients are lucky to be seen briefly once a week by their GP, and if an apparent emergency occurs, they are unlikely to visit; the ambulance is called, and the problem dumped on the emergency department with little information. The effective way to avoid unwanted treatment, or to receive treatment if it is wanted, is to have effective communication based on good information. Just as immunisation for infants is a fundamental discussion for GPs with young mothers, end-of-life discussions should also be fundamental for all older patients with their doctors, and they should be ongoing as ageing progresses, because, as Hitchcock points out, our opinions can change as we age.

Notably absent from the anecdotes is any sense of the acceptance of death, a prerequisite to a good death. Too often we read of “fear of death,” and “not wanting to die” – of a lack of preparation for the inevitable which, with sensitive communication, might have been addressed.

Currently there is an assumption that the costs of caring for our frail elderly will skyrocket as the community ages over the next thirty years. This is based on the assumption that people want the care that is currently offered, and will continue to do so. How do we know, if we do not ask older people what they want? Currently we tell them what they will get. Most people do not ask to go into an institution, they end up there by default, in much the same way that many end up in emergency departments having treatment they might not want – or they might, the vital point that Hitchcock makes. We sometimes deprive the frail elderly and show them disrespect by not involving them in decision-making. Given that many may gradually lose the capacity to make their own decisions, it is vital to assist them to make sound medical directives for treatment of future conditions. Hitchcock rails against vague health-care plans, drawn up by non-medical planners. They are often ill-defined requests for consideration of “values” in decision-making, not specific directives for specific circumstances. So long as a person can communicate, the directive is unnecessary, but if they can’t, and never will, it is of the utmost value in preventing unwanted treatment.

The penultimate section of Hitchcock’s essay is titled “Death.” It contains two anecdotes: one about Hitchcock’s grandmother, who died peacefully in hospice, and the second about the mother of a physician (with a medical husband and nurse daughter), who is dying at home with palliative care involvement. Of this process, the physician mother said, “It was enormously distressing, to cope with the physical supports she needed . . . as well as the emotional support to her and each other. She was terrified of dying and suffered great psychological and spiritual distress . . . [it] was a terribly exhausting and traumatic experience.” This is very sad and, by anybody’s reckoning, not a good death. Yet Hitchcock mocks the concept of a good death. She cites the Grattan Institute’s twelve criteria for a good death, six of which relate to control and three to information and knowledge, all of which can be provided if one embraces the concept of hastening death to relieve intolerable suffering. Hitchcock responds with, “the only way we could come close to meeting all these criteria for a good death would be to put people down when they reach a predetermined age, before the chaos of illness sets in.” Such hyperbole and exaggeration is all too frequent in this essay.

Nevertheless, Hitchcock does us all a service in raising these difficult matters, and critiquing many problems in current medical practice, particularly the potential to deprive the frail aged of care by means of ageism and the concept of futility.

Rodney Syme

We are living in an age of forced certainty, a period in which ambiguity, doubt and unpredictability cannot be tolerated. Instant answers are demanded to even the most difficult questions. If a fact or a name or a date is not known, we can look it up at once on our computer or smartphone. We can check the latest news, download any song, find out the weather or the stock-market figures at any time. Never has so much information been so readily accessible so quickly. We live our lives fighting the discomfort associated with uncertainty and the lack of control evoked by it.

In spite of all this technological capacity, there is one part of our life that has so far largely resisted demands for complete exactitude: that of our own death. Indeed – perhaps paradoxically – in the modern world, old age and death have become, if anything, increasingly disturbing and unpredictable. Retirement and old age were once anticipated as times of comfort and security; today they are associated with the threat of sickness, loneliness and dependency. Where once old people were supported and valued, today they are presented in public discourse as a dangerous drain on resources. The uncertainty is exacerbated by government deliberation about how to limit health spending on the elderly. The increasing sense of crisis about costs has led to renewed debate about whether absolute limits should be drawn on the availability of expensive healthcare measures, with some experts calling for rules limiting access for old people to intensive-care units and other expensive treatments.

The developing sense of precariousness and vulnerability is undoubtedly one reason for the increased public interest in protocols and laws that purport to make it easier for elderly people to refuse medical treatments at the end of life, including legalisation of euthanasia and assisted suicide. They also explain persistent calls for the use of advanced care directives, in which individuals outline their preferences about the care they would want to receive in the event of serious illness. The campaign in favour of such directives has been determined and vigorous, to the extent that some proponents demand they be made compulsory for all patients entering the public hospital system.

Karen Hitchcock’s brilliant essay takes issue with many of the popular assumptions about medical care at the end of life and draws attention to the risks of the search for certainty, and the use of medicine as a weapon to reduce government expenditure. Drawing on her own experience, she exposes the complexities of clinical decision-making in serious illness and the impossibility of taming, purifying and regulating death.

No one can remain unaffected by her passion, her intense personal engagement and her appreciation of the quirks and idiosyncrasies of her elderly patients. We might be unsettled by the stridency of her tone, but we are left in no doubt that she is on their side, that she is prepared to go into battle to defend those who have placed their trust in her against the forces of a culture that increasingly characterises old people as rapacious, greedy consumers of the common wealth.

Hitchcock’s essay is in part polemic and in part deep meditation on the current predicaments of medicine and its relationship to society. She declines to conform to the role of tame apologist, either for the conventional medical regimes of power or for those arguing for greater patient autonomy, purportedly in support of the “human rights” of elderly people. She rejects the job of gatekeeper to the treasury of healthcare resources. She throws down a challenge to those who want us to think that more protocols, laws and regulations will make death less precipitous and terrifying. And she issues a clear call for us to recognise what is all too often obscured: that ordinary experience is not insipid, mundane and grey, but is often also the bearer of powerful emotions, of pain, happiness and deep sadness.

Although Hitchcock is not a philosopher, she eloquently articulates some profound philosophical insights. She rejects the abstract, universalistic formulations of much of contemporary bioethical discourse, opting instead for a highly nuanced, context-specific narrative approach. She rejects the cool cynicism of the instrumental forms of reason that have overwhelmed our society, its institutions and – in a bizarre paradox – even its practices supposedly devoted to caring. Implicitly, along with much modern philosophy, she recognises that being and subjectivity do not precede all sociality and feeling, that we are not composed as isolated subjectivities pitted against inexorable, unremitting attempts to limit our freedom. Against these assumptions, she affirms the fundamental status of mutual responsibility, of our connections and duties to each other, and of caring and compassion as core values which should guide medical decision-making and against which it should be assessed.

Dear Life
is full of strong contentions with serious consequences. Illness and suffering – it claims – are not peripheral to our experience, but are central to and constitutive of it. While it is true that no one chooses to undergo a painful or life-threatening illness, to suffer the death of a child, to have cancer, a heart attack or a stroke, or to find oneself dependent on medical treatment or on other people, these are experiences that generate meaning in our lives, that bring us wisdom, insight and knowledge. While we cannot extinguish the confusion, poignancy, uncertainty and terror associated with the dying process, nor do we need to be repulsed by it, or to seek to control or regulate it.

The most moving part of the essay is Hitchcock’s account of her grandmother’s death, with its deep resonances of sadness, joy and incomprehension. The fact that, years later, she is able with such pride and power to draw on these memories, still ringing as they are with meaning, is in itself sufficient to prove her case, for this demonstrates how rich a resource a single death can become, not just for the bereaved family but for all of us.

Hitchcock will no doubt attract hostility for her uncompromising attack on fashionable doctrines. Foremost among these is her critique of the intense pressure, mentioned above, exerted in support of advanced care directives and limitations on care as an answer to the untidiness of dying, the mounting cost of health care, the budget deficit and the pain of bereavement. With resolute determination, she lays bare the weaknesses of this new orthodoxy. She does not, of course, contest the need for careful and sensitive discussions involving patients, families and professional carers about fears, hopes, wishes and needs. She does not question the importance of careful and meticulous identification and documentation of individual preferences about the nature and extent of medical interventions and therapies: indeed, it is a premise of her entire argument that more, not less, of this is needed. However, as she emphasises, any plans or “directives” have to be interpreted in changing circumstances, attitudes and experiences.

The key point here should not be too hard to understand. It is impossible to anticipate all circumstances of an unknown future illness. A statement supposedly rejecting a specific treatment might in reality be an expression of vulnerability, uncertainty and fear. There is a profound difference between the use of mechanical ventilation in a patient with terminal cancer to extract only a few extra hours of life and its short-term application to someone injured in a car accident so as to allow full and permanent recovery. In the latter case, a “directive” purportedly forbidding the use of life-saving technologies should certainly be taken into account, but ought not carry the force of an absolute obligation. Most of us would agree that the doctor we prefer in such cases is not the one who mindlessly and slavishly follows protocols and directives, but the one, like Hitchcock, who is prepared to consider our predicament, our needs and interests, with circumspection, generosity and imagination.

Despite their superficial attractiveness, regimes outlining formal pathways for dying; rules and protocols for clinical decision-making; and compulsory, universal advanced directives do not provide a panacea for fear and uncertainty. None of these things enables us to cleanse death of its pain and sorrow, to rid it of its uncontrollable ambiguity, to clear away the deep echoes of sadness and emptiness, to fill the yawning chasm of emptiness and loss.