Matters of Life and Death

Key Writings

Iona Heath

• Publisher: Routledge
• Year: 2018
• Print ISBN:
  9781846190964
• eBook ISBN:
  9781315347288
• Topic: Medicina
• Subtopic: Medicina de familia y práctica general

In this extraordinary book, Iona Heath draws on her experience as a general practitioner to select and comment on a collection of passages concerning death and dying, and to consider the essential nature of general practice. In Ways of Dying Heath illuminates the process for professionals and lay readers, and stimulates consideration of approaches to improved care at end of life. Her renowned work The Mystery of General Practice (which has been unavailable for some time), considers the complex character of this field, its core values and changing roles. The two extended essays cover important issues on the role of the healthcare professional in the care of the dying, the idea of life and death, and the essential nature of general practice. Matters of Life and Death offers inspiration for all doctors, especially those with an interest in medical humanities. It will also be of great interest to general readers interested in end of life matters, and the nature and art of medicine.

Ways of Dying

Iona Heath

Ways of Dying

Society, art, culture, the whole of human civilization is nothing but evasion, one great collective self-delusion, the intention of which is to make us forget that all the time we are falling through the air, at every moment getting closer to death.

SVEN LINDQVIST¹

Contents

1. Introduction

2. The denial of death

3. The gift of death

4. Ways of dying

5. Alive until dead

6. How is it possible to die?

7. Time and eternity

8. What the doctor needs

9. Science and poetry

1 INTRODUCTION

I write to find my way. My signposts are words – those of my patients and my friends, and those of writers whose extraordinary talents teach us how words work and about their capacity to hold and communicate meaning and to make us feel less alone. My method is defended by Walter Benjamin:

Learning was a form of collecting, as in the quotations and excerpts from daily reading which Benjamin accumulated in notebooks that he carried everywhere and from which he would read aloud to his friends. Thinking was also a form of collecting, at least in its preliminary stages. He conscientiously logged stray ideas; developed mini-ideas in letters to friends.²

More recently, complexity theory lends support with the notion that new meaning emerges from chaos.³

The great 19th century Russian radical Alexander Herzen included within his autobiography a chapter rather cumbersomely entitled ‘A relevant chrestomathy from the later years’.⁴ This strange word combines the Greek words for useful and learning and it is used to describe a collection of short quotations, especially one that is compiled to help in the learning of a language. In a sense, what follows is my personal annotated chrestomathy for a language of dying which makes sense in the context of my work as a general practitioner over many years. It describes a journey within which the words of poets, writers and thinkers illuminate the struggles of ordinary people and the details of lives and deaths which are always in some measure extraordinary.

Fifty-six million people die each year. Even if each death affects only five other people, the total number affected each year approaches 300 million or 5% of the world’s population.⁵ Dying permeates living, and yet much of the public response to death and dying remains polarised between sensationalism and silence.

NOTES AND REFERENCES

1 Lindqvist S. Exterminate All the Brutes. London: Granta Books, 1997, p. 95.

2 Sontag S. Under the Sign of Saturn. London: Vintage, 1996, p. 127.

3 Sweeney K. Complexity in Primary Care: understanding its value. Oxford: Radcliffe Publishing, 2006.

4 Herzen A. My Past and Thoughts (1913). Berkeley: University of California Press, 1999, p. 643.

5 Singer PA and Bowman KW. Quality care at the end of life. British Medical Journal. 2002; 324: 1291–2.

2 THE DENIAL OF DEATH

Some years ago, an elderly patient on my list was admitted to hospital when the warden in her sheltered accommodation called an ambulance after she collapsed. She was in her late 80s, a widow and very frail. A furore over ageism in medicine was at its height and, perhaps as a result, she was admit ted to a coronary care unit and received the highest possible standard of care, including fibrinolytic treatment delivered according to the latest evidence-based guidelines. She made a good recovery and was discharged home, apparently well, a week later. I went to see her and found her to be very grateful for the care that she had been given but profoundly shocked by a course of treatment that she perceived to be completely inappropriate. She explained to me that not only her husband but almost all of her generation of friends and acquaintances were already dead, that her physical frailty pre vented her doing almost all the things that she had previously enjoyed and that she had no desire to live much longer. No-one had asked her about any of this or attempted to discover whether the effective and therefore recommended treatment for her condition was appropriate in her particular case.¹ She died three weeks later while asleep in bed. The considerable costs of her earlier treatment had been futile, distressing and wasteful.

As a general practitioner I am conscious of failing many of my patients – none more so than those who are dying. Why is it that so few of our patients die what would be recognised or described as a good death? What indeed is a good death? What manner of dying do we want for ourselves and those we love? Talking to friends and colleagues, I discover that many are able to describe their involvement in a particularly special death, where the dying person seemed able to control and orchestrate the process and to die with a dignity and calm that left everyone around them, the doctor included, feeling privileged to have been part of the story, and in some strange way enriched by it. But what is striking is how rare these deaths are. So many more are bungled and undignified, marked by overwhelming fear or suffering or both, and leaving those remaining, again including the doctor, with feelings of anger, guilt and sorrow. What goes wrong?

In A Fortunate Man, John Berger emphasised the centrality of the role of the general practitioner in relation to death.

The doctor is the familiar of death. When we call for a doctor, we are asking him to cure us and to relieve our suffering, but, if he cannot cure us, we are also asking him to witness our dying. The value of the witness is that he has seen so many others die … He is the living intermediary between us and the multitudinous dead. He belongs to us and he has belonged to them. And the hard but real comfort which they offer through him is still that of fraternity.²

However, during the last 100 years, the spectacular success of scientific medicine has allowed doctors to turn away from this traditional role as the ‘familiar of death’. The technological challenge of prolonging life has gradually taken priority over the quality of the life lived. By dangerous and insidious processes, we have lost sight of the extent to which how we live matters more than when we die. Perversely, nowhere is this more clear than in the care of the dying.

The hubris of scientific medicine fuels ever-increasing public expectations of perfect health and consistent longevity, and these processes are eagerly exploited by both journalists and politicians, and, most of all, by the pharma ceutical industry. The aim of health care and the endpoint against which it is evaluated has become, to a very great extent, the simple prolongation of life. We talk all the time about preventable deaths – as if death could ever be prevented rather than postponed.³ We indulge in activities and restraints that we suppose will make us live longer,⁴ and the timeliness of many deaths seems never to be discussed.

Standards of health care are dictated more and more by evidence-based protocols which, by their nature, regard patients as standardised units of disease. Such protocols have no way of accommodating the unique story of the individual – the particular values, aspirations and priorities of each different person and the way that these shift over time. As a direct result, a rational evidence-based intervention of proven efficacy can turn out to be inappropriate, wasteful and futile

Western societies collude in what Philip Larkin described as ‘the costly aversion of the eyes from death’.⁵ The cost is monetary, but it is also one which takes a deep toll of our experience of both living and dying. Despite the expensive pretensions of medicine, death remains the inevitable end of life, and is often unpredictable, arbitrary and unjust; yet it is seen more and more as a simple failure of medicine and doctors. Medicine cannot promise the relief of all bodily discomfort and pain, yet we become ever less tolerant of these and ever more convinced that we have a right to perfect health. Scientists and doctors, but also journalists and politicians, carry a great responsibility for perpetuating these dangerous illusions, which serve to further damage, demoralise, stigmatise and disappoint the dying and those suffering from chronic diseases that can be treated but not cured.

The continuing emphasis on lifestyle risk factors for disease creates a climate of victim blaming which adds a sense of guilt to the distress and terror suffered by those arbitrarily afflicted by serious disease. Susan Sontag notes that, in the films of Ingmar Bergman, the realm of justice – the notion that characters get what they ‘deserve’ – is rigorously excluded.⁶ This may explain the bleakness of some of the films but it is also underpins their power and their authenticity. We all try to make sense of our lives by constructing a coherent narrative that includes notions of cause and effect. We tell ourselves and each other that something happened because we did this or because that was done to us, but the link between cause and effect is often much more tenuous than we like to imagine.⁷ The current wave of exaggerated claims for the power of preventive medicine is part of the same phenomenon.⁸ We want to believe that if we behave well, eat t...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright Page
• Table of Contents
• Preface
• About the Authors
• A Story
• Ways of Dying
• Twelve Theses on the Economy of the Dead
• Connections
• The Mystery of General Practice