Abstract
How is it that at the beginning of the 21st century, we have forgotten how to die and have even forgotten that death is itself a gift? The art and literature of previous generations was steeped in the tradition of memento mori designed to make humanity explicitly aware of the brevity of life and of the urgent need to use the short time to its limits. Today, we who live in the richer countries of the world have the unprecedented good fortune of a gratifyingly extended expectation of life but, apparently still dissatisfied with this, we seem to want to push it further and pretend that life can be indefinitely extended. Public rhetoric now attaches more value to the length of life than to its intensity—and the whole of health and social policy seems to be predicated on the belief that everyone wants to live forever. There is no allowance in this view for those whose lives are full of doubt and desperation and a recurring uncertainty as to whether life is worth living at all; no room whatsoever for an understanding of suicide. And yet, as Primo Levi reminded his readers, the gift of death is that while it places finite limits on the possibility of infinite happiness, at the same time and in precisely the same way, it curtails the possibility of infinite suffering and infinite despair.
Today, of course, we remain aware of death but in an unacknowledged, almost furtive way, and as an undercurrent of fear. It has become an imperative of social responsibility to minimize exposure to risk and the enthusiasm with which we do this insidiously undermines our enjoyment of the excitement and thrill of living. A whole generation of children has been deprived of the delights of playing outside without adult supervision because of a distorted perception of risk. This cosseting of children in the richer countries contrasts all too starkly with the experience of children who have the simple misfortune to be born on the losing side of the equation.
The denial of death within contemporary Western society means that everyone is obliged to stay alive and to struggle for life to the limits of endurance. Patients and relatives ask for more and more treatment and this general expectation makes it very difficult for an individual to choose the different path of letting nature take its course during a final illness. For reasons that are not entirely clear to me, religion too often allies itself with medical science to deny nature. In Italy, this found extreme expression in the case of Eluana Englaro. This 38 year old spent almost half her life in a persistent vegetative state, kept alive by medical technology after a tragic accident in 1992. Her father struggled through every layer of the Italian courts seeking permission to have artificial feeding stopped so that she could be allowed to die. Eventually, in 2008, permission was granted but within weeks and at the last moment, the Vatican questioned the morality of the decision and caused a further delay. Finally, on 9 February 2009, Eluana died, 4 days after her feeding tubes had been removed, and yet the political, judicial and religious wrangling has continued.
In a similar way, but with people who are mostly of a very different age, it has become standard to use feeding tubes when those who have suffered severe strokes or dementia are no longer able to swallow. All this achieves is to close off one of the routes that nature has provided to allow the body to die. Someone suffering from advanced dementia could be said to be meant to develop swallowing problems which lead to pneumonia and so to the escape of death. Nature provides its own exit strategies. So why are we so unwilling to allow nature to take its course; why do we expect doctors to push the boundaries so far in this direction?
Life can be wonderful and the giving and receiving of love, one of its greatest joys; the losing of life or love is terrible and justly feared. Yet, the finitude and the fragility of both life and love are essential constituents of the wonder and the joy.
There seems an urgent need to rediscover traditions of resignation, stoicism and courage in the face of death on the part of both the dying and those who love and care for them. We need better ways of coping with the pain that comes with the loss of life and love. We have allowed long traditions of ritual to wither away but, at the same time, we have lost the framework of behaviour that ritual provided and the comfort and security that this can bring. People feel adrift and uncertain and have little idea what is expected of them. Fewer and fewer people have witnessed others dying. Priests have lost their role and doctors who were the other traditional familiars of death are too busy trying to keep the dying alive.
Yet, in the care of all patients, science takes a doctor a long way but not far enough—and when a doctor looks after a patient who is dying, science becomes even more inadequate. Death occurs at the limits of medicine and doctors have consistent trouble in acknowledging or even recognizing these limits. As a direct result, quite unintentionally but much too often, medicine is used, within contemporary society, to torture the dying. Scott Murray et al. interviewed dying patients in both Kenya and Scotland. The Kenyan patients described wanting to die because the pain and the other symptoms of their disease were so awful; patients in Scotland described wanting to die because the side effects of their medical treatment were unbearable. In the United States, a study of the care of patients with either disseminated cancer or advanced dementia, dying in an acute hospital, showed that, for nearly a quarter of both groups, cardiopulmonary resuscitation was attempted and more than half of those with advanced dementia died with a feeding tube in place. Where does this sort of care leave dignity and the possibility of peace? It seems to me to amount to a terrible indictment of the role of medicine in the care of the dying.
In my more than 30 years as a family doctor, I have tried to make sense of this situation by seeking both solace and inspiration in literature. The task of finding meaning in the finite limits of life and in its inevitable losses is common to all humanity and neither the specialist knowledge of doctors nor even their familiarity with death gives them any particular aptitude for this most fundamental of existential tasks. And all of this is perhaps even more difficult for younger doctors who mostly have fewer reasons or opportunities to contemplate their own mortality. Further, with the power of modern medicine, it is all too easy for doctors of all ages to sidestep these issues by giving more treatments and more drugs while avoiding the gaze of the dying person. The effect is to treat the dying person almost as an object in need of a technical fix and this consigns the dying to death rather than to life and treats the dying person as if they were already dead. It is infinitely more difficult for the doctor to remain fully present for the dying person and so to acknowledge the importance of the relationship between two mortal human subjects facing the same existential challenges, albeit across a different timescale.
Writers and perhaps particularly poets face these issues both more obliquely and more directly. The key is that they use words with care, thought and deliberation to approach a truth which is recognized by others with an immediacy that makes them feel less alone because aspects of their experience of life and the world have been acknowledged and described. The greatest poets reveal truths that we, as readers, already know but with a new clarity and a new depth that enriches and extends our experience. As the Nobel Laureate Seamus Heaney wrote ‘The world is different after it has been read by a Shakespeare or an Emily Dickinson or a Samuel Beckett because it has been augmented by their reading of it.’
If we are to have any hope of forging a more humane contract between science and nature in the care of the dying, we will need all the help we can get from all the different dimensions of human wisdom that are explored within literature and the other humanist disciplines — and perhaps particularly within poetry.