DEAR LIFE

Correspondence

Paul A. Komesaroff

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.

We need more doctors like Karen Hitchcock, doctors who are committed and compassionate and prepared to take on the world for the sake of their patients, who are courageous enough to raise their voices against the fashionable dogmas of protocol-driven efficiency and cruelly balanced budgets. We need doctors who are prepared to take her message to heart and to reinstate at the centre of medicine the values of caring on which it has always depended.

Paul A. Komesaroff