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Medical Humanities Companion
VOLUME ONE

Symptom

Edited by
Martyn Evans
Rolf Ahlzén
Iona Heath
and
Jane Macnaughton

Series Editors
Rolf Ahlzén, Martyn Evans, Pekka Louhiala
and Raimo Puustinen

Radcliffe Publishing
Oxford • New York
Radcliffe Publishing Ltd
18 Marcham Road
Abingdon
Oxon OX14 1AA
United Kingdom

www.radcliffe-oxford.com
Electronic catalogue and worldwide online ordering facility.

©2008 Martyn Evans, Rolf Ahlzén, Iona Heath and Jane Macnaughton

Martyn Evans, Rolf Ahlzén, Iona Heath and Jane Macnaughton have asserted their right under
the Copyright, Designs and Patents Act 1998 to be identified as the authors of this work.

All rights reserved. No part of this publication may be reproduced, stored in a retrieval system
or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording
or otherwise, without the prior permission of the copyright owner.

British Library Cataloguing in Publication Data

A catalogue record for this book is available from the British Library.

ISBN-13: 978 184619 286 9

Typeset by Pindar NZ, Auckland, New Zealand

 Contents

About the series editors vii

List of contributors ix
Acknowledgements x

Introduction 1
Martyn Evans, Rolf Ahlzén, Iona Heath and Jane Macnaughton

The patients’ stories: Rachel, Jake, Liz and Jen 7

Anne MacLeod

1 Music, interrupted: an illness observed from within 14

Martyn Evans

2 The body as lived experience in health and disease 27

Carl-Edvard Rudebeck

3 Issues of privacy and intimacy at the beginnings of illness 47

Iona Heath

4 Vocabulary of health and illness: the possibilities and limitations

of language 59
John Saunders

5 Seeing ourselves: interpreting the visual signs of

illness 71
Jane Macnaughton

6 The response to suffering 86

Jill Gordon
7 Another day with a headache: semiotics of everyday
symptoms 101
Raimo Puustinen

8 Giving meaning to symptoms 115

Rolf Ahlzén

Index 131
 About the series editors

Rolf Ahlzén is working part-time as a general practitioner outside Karlstad in

south-west Sweden. He is also the chairman of the ethical committee in the
region of Värmland. He holds a position as senior lecturer in public health at
Karlstad University, focusing mainly on healthcare ethics and on the history
of ideas and science.

Martyn Evans joined Durham University in 2002 as Professor of Humanities

in Medicine and Principal of John Snow College, and became Principal of
Trevelyan College in 2008. He taught philosophy and ethics of medicine at
the University of Wales for several years.
He was founding joint editor of the Medical Humanities edition of the
Journal of Medical Ethics from 2000 to 2008. He has published variously on
the aesthetics of music, ethics and philosophy of medicine, and the role of
humanities in medical education. His current interests include music and
medicine, the nature and role of humanities in medicine, and philosophical
problems in medicine. In 2005 he was made an honorary Fellow of the Royal
College of General Practitioners.

Pekka Louhiala is a lecturer in medical ethics at the University of Helsinki,

Finland. He has degrees in both medicine and philosophy, and he also
works as a part-time paediatrician in private practice. He has published
on various topics in medical ethics, philosophy of medicine and epidemi-
ology. His current academic interests include conceptual and philo-
sophical issues in medicine, such as evidence-based medicine and placebo
effects.

vii
viii ABOUT THE SERIES EDITORS

Raimo Puustinen is a full-time general practitioner and a senior consultant

at Pihlajalinna Medical Centre, Tampere, Finland. He has published articles
and books on general practice, medical ethics and philosophy of medicine.
When not practising medicine or contemplating theoretical issues in medical
practice, he plays jazz on the tenor saxophone. He is married, and has four
children and two grandchildren.
 List of contributors

Jill Gordon
Honorary Associate Professor, Centre for Values Ethics and the Law in Medicine,
University of Sydney

Iona Heath
General practitioner, Kentish Town, London

Anne MacLeod
Dermatologist and writer from the North of Scotland

Jane Macnaughton
Director of the Centre for Arts and Humanities in Health and Medicine
(CAHHM)
Clinical Senior Lecturer, Durham University

Carl-Edvard Rudebeck
Research Adviser, Kalmar County Council
Professor, Institute for Community Medicine, Tromsö University, Norway
General practitioner, Esplanaden Health Centre, Västervik

John Saunders
Honorary Professor, Centre for Philosophy, Humanities and Law in Healthcare,
School of Health Science, University of Wales, Swansea
Honorary Senior Lecturer, College of Medicine, University of Wales, Cardiff
Consultant Physician, Nevill Hall Hospital, Abergavenny

ix
 Acknowledgements

The Editors wish to thank the Nuffield Trust and the University of Wales
for making possible, at the magnificent Gregynog Hall in Powys, Wales, the
academic seminar that first led us on to the path of collaborative publication.
We are enormously grateful to Gillian Nineham, Managing Editor of Radcliffe
Publishing, for personally encouraging the publication of an initial volume
of philosophical writings on clinical practice, and then for seeing through the
‘lens’ of that volume the possibilities of a fuller medical humanities series. The
subsequent support of Radcliffe Publishing was crucial for the development
of the series, particularly at our first interdisciplinary planning meeting at
Radcliffe’s Abingdon headquarters.
We are indebted to all of our fellow contributors who between them also
provided a considerable amount of mutual peer review. Special mention
must be made of one of these contributors, Raimo Puustinen, whose many
talents included finding the Villa Belpoggio in Tuscany, the ideal location for
the book conference which led to this volume. Raimo alone had the foresight
to bring his family with him to that idyllic spot. The rest of us therefore owe
correspondingly even greater debts of gratitude to our own families, who have
supported our participation in the project despite forgoing the pleasures of a
truly inspirational location.
Finally, we would like to record particular thanks to Maria Ventrone, who
oversaw our hospitality in the Villa Belpoggio with thoughtful insight into the
nature of the project that we were attempting, and whose abundant humanity
had helped her to overcome her own serious illness in a way that gave us real
inspiration. This volume is respectfully and affectionately dedicated to her.

x
 Introduction

Falling ill is not something that happens to us, it is a choice we make as

a result of things happening to us. It is an action we take when we feel
unacceptably odd. Obviously, there are times when this choice is taken
out of the victim’s hands: he may be so overwhelmed by events that he
plays no active part in what happens next and is brought to the doctor
by friends or relatives, stricken and helpless. But this is rare. Most people
who fall ill have chosen to cast themselves in the role of patient. Viewing
their unfortunate situation, they see themselves as sick people and begin
to act differently.
Jonathan Miller 1

‘. . . when we feel unacceptably odd’ – this is a curious yet perceptive description

of the onset of a symptom, the point at which we notice in our self-experience
something that is both different and unwelcome, both odd and, in the long
run, unacceptable. It is with such unacceptable oddness, such unwanted
intrusions into our self-awareness marking the first stages of illness, that this
book is concerned. In it we shall attempt to explore the idea of symptoms,
their experiential reality, and their significance. However, this is not a clinical
textbook, nor is it an anthropological survey, or a historical review. If it were
any single thing, one might perhaps say that it was a somewhat fictionalised
form of doing philosophy. But what this means is really the attempt to bring
both reason and imagination to bear on the question of how symptoms are
to be understood.
In attempting this, we are really only making explicit something – the
imagination – that is intimately involved in most forms of reasoning anyway,
however un-obvious that might sometimes be. As Jonathan Miller (with whose
shrewd observation we began) himself put it, in the development of medico-

1
2 INTRODUCTION

scientific understanding of the human body, ‘the most impressive contribution

to the growth of intelligibility has been made by the application of suggestive
metaphors.’2 The heart as a pump is comprehensible enough. Voluntary
muscular movement as the operation of automatic gun turrets is perhaps
less so. However, between these the physiological counterparts of ‘furnaces,
crucibles, ovens, hearths, retorts and stills’ and devices which ‘lift, dig, hoist,
wind, pump, press, filter and extract’3 provide a wealth of analogies that have
enabled medicine ‘to visualise the body not merely as an intelligible system,
but as an organised system of systems – which does not mean that man is an
engine or that his humanity is a delusion.’4 Miller’s concern is to counter the
popular rejection of science, or at least that form of rejection which supposes
science to be destructive of the human imagination, and in this he is surely
right. However, his method is a challenging one – namely to show ‘that one
of the most effective ways of restoring and preserving man’s humanity is by
acknowledging the extent to which he is a material mechanism.’5
This is of course itself a further, very large metaphor. Indeed, it is an
important part of medical science’s contemporary organising metaphor for
human nature. This is a metaphor to be taken seriously, not least by those
who find it ultimately unsatisfying. And the notion of a symptom is as good
a starting point as any, for trying to take seriously the extraordinary fusion of
the material and the existential that is conscious human experience. Nowhere
is this more important than in health and sickness, and in our organised
responses to the challenges of both.

WHAT WE ARE TRYING TO DO: WHAT WE TAKE MEDICAL

HUMANITIES TO BE, AND TO ATTEMPT
The phrase ‘medical humanities’ has a currency that is perhaps wider than any
agreement as to what it means. Even so, those engaged in medical humanities
usually know what they are attempting. In Volume One we are attempting to
understand the very idea of a symptom, and also the implications of particular
symptoms. The idea of a symptom is important for understanding the
structure of clinical practice. However, the particularity of specific symptoms
is important for understanding the fact that real, actual symptoms are always
experienced by real, actual individuals – however much those experiences are
mediated by language, culture, expectation and the conventions of the clinical
consultation. And this in turn is important because it reminds us that health,
illness, well-being and suffering are first and foremost aspects of experience.
Scientific medicine describes the material substances of health and
illness, but the reason why patients consult their doctors is generally because
 INTRODUCTION 3

something is amiss in their experiences of daily living. Inflammation is

significant to patients not in itself but because of the felt soreness, stiffness or
visible disfigurement that it produces. Low blood pressure may be privately
applauded by doctors even though their patients complain of feeling dizzy
if they get up too quickly. A blocked Fallopian tube is of only theoretical
interest to the patient, until she feels the despair of being unable to conceive
a longed-for child. Medical humanities perspectives on symptoms and ‘the
symptom’ pay special attention to these experiential aspects because, in the
end, it is these experiential aspects that motivate people to go and seek help
from medicine and healthcare.

TAKING SUBJECTIVITY SERIOUSLY

How are such experiential aspects to be understood, reckoned with and
incorporated into clinical understanding? It is necessary somehow to take
seriously the patient’s subjectivity. This means taking seriously the content of
the patient’s individual point of view, the way of life that has led up to it, the
meanings and connotations that inform it, and the way it is shaped by other
people – including, of course, the clinician. From the perspective of clinical
understanding and decision making, this means taking the thoughts and
attitudes of the patient-in-context as seriously as the generalised truths about
the human organism supplied by the natural sciences. The natural sciences
give us knowledge that defines the boundaries of rational conceptions of what
people might do. However, we look elsewhere – to the humanities and social
sciences – to understand the basis of people’s attitudes towards what they
should do, and their motives for what they in fact do.6

THE IDEA OF THE PATIENT’S PROGRESS

In looking at symptoms, and at the idea of a symptom, we are in effect charting
the first step along the road whereby someone becomes a patient. As we all
know, into every life some rain must fall, and as we equally well know, this
rain sometimes takes the form of illness, infirmity or disability. The first drops
of rain are the symptoms – the growing awareness that something is not right,
that something unwanted and unbidden is happening, something that is
unwanted in itself and also unwanted because of what it might lead to.
What happens thereafter depends on many things – the seriousness of the
underlying reason for the symptom, the patient’s tolerance of non-serious
illnesses, the availability of accessible healthcare, and so on – and we shall
explore these sequels in future volumes. However, for now our attention
4 INTRODUCTION

is focused on this first phenomenon – the symptom. Depending on what

happens, it may successfully be ignored and never amount to anything else.
Alternatively, it may turn out to be the forerunner of catastrophe.
Only later, looking backwards – perhaps from the other side of illness,
diagnosis, treatment, and maybe recovery – will the symptom take its place
as the opening event in a full sequence of events, a story that is played out in
the life of a particular human being, the patient. At the outset, we do not even
know whether the symptom will form a part of any subsequent story at all.
We do know, however, what might count as a story. In his extraordinary
autobiographical account of a severe leg injury, neurologist Oliver Sacks tells
at least two stories about his illness, recovery and convalescence.7 One story
– in the sense of a structured sequence of events in time, linked in terms that
are at least partly causal – concerns the ‘career’ of the pathology within his
leg in terms of the fragmentation and reconstruction of human tissue even at
the cellular level. It has its narrative sequence, its cast of characters and – for
the onlooker – its high stakes and its dramatic suspense. But of course this is
in real terms only a parallel set of phenomena to the story that matters – the
‘career’ of the sufferer, the immobilised and frustrated mountain climber,
the fearful yet curious medically qualified patient. And we can say that this
is the story that matters because the cellular ‘story’ takes its interest from
the existential implications it has for Sacks, the sufferer, the man, whereas the
patient’s story consists precisely in those existential implications.

DISCIPLINES, ENQUIRIES AND QUESTIONS

This book might have been very different had we pursued our original
intention of producing a series of volumes each tied to a separate disciplinary
viewpoint. A number of the contributors had previously collaborated on just
such a volume, self-consciously collecting together, and bringing to bear upon
clinical medicine, aspects of enquiry within a single humanities discipline,
namely philosophy.8 It might have been possible therefore to repeat that
exercise for other humanities disciplines, such as medical history, literature
studies, linguistics or art theory, or for social sciences disciplines, such as
anthropology or sociology. However, the ready availability of this approach
perhaps suggested that it was not sufficiently fresh.
An alternative method, that of bringing together different disciplinary
viewpoints simultaneously to bear on a common object of enquiry – insofar as
this can be done – seemed both more ambitious and more attractive.9 More
attractive, because a series of volumes each looking at a different stage in the
sequence of stages of the illness process would accumulate into a larger overall
 INTRODUCTION 5

story, a story that could be followed in both narrative and analytic form, and
because many different kinds of voices would be heard within each volume.
Each volume would be a kaleidoscope in itself.
But more ambitious, too – because the very idea of a ‘common object of
enquiry’ becomes fragile when we look at something through very different
disciplinary perspectives. If the disciplines are sufficiently far apart – consider,
say, religious studies and genetics – then it is obvious enough that the
theologian on the one hand and the molecular biologist on the other do
not really see the same thing when they look at the vulnerable human
being. However, even more closely related disciplines within the aegis of
the humanities may vary as well in terms of their perspective. Is an illness
as an object of enquiry necessarily the same thing for the philosopher as for
the historian? At any rate, the question certainly arises, and we are under
no illusions about the task ahead if we are to make Volume One and its
later companions a genuine fusion of disciplinary insights, discourses and
metaphors.10
In Volume One, our hope is to ask questions about the meaning of
actual symptoms and of the concept ‘symptom’, from a convergent range
of disciplinary expertise, as the prelude to a cumulative interdisciplinary
understanding of illness as a human need, and clinical medicine as a human
response to it.

THE STORIES
We have structured our thoughts around the symptoms encountered by four
representative, albeit fictionalised, patients. Their varied stories derive from
actual clinical experiences, but are sufficiently removed from identifiable
individuals as to avoid questions of consent or anonymity. Between them,
Rachel, Jake, Liz and Jen represent a variety of ages, symptom experiences and
types of underlying clinical condition, although we recognise that they fall
within a common cultural milieu. They are imagined and described for us
by a published novelist and poet who is also a specialist physician working
in dermatology, and who combines reason and imagination in both of her
chosen professions.
The onset of symptoms is of course only the first stage in the journey
undertaken by a patient. In subsequent volumes we shall follow these four
patients on the successive stages of their journeys.
6 INTRODUCTION

THE WRITERS
A few years ago a number of us met in an old country house in rural Wales to
consider how we might pursue the virtues of philosophical and other forms of
humanities study in an understanding of medicine and healthcare. It might be
said that what prompted our original conversations were our various species
of dissatisfaction with the ways in which clinical medicine was being analysed,
researched, taught and – in some ways – practised. From the outset, several
different disciplines and a number of nations were represented. Today we
comprise medical specialists, general medical practitioners and humanities
scholars from Australia, England, Finland, Scotland, Sweden and Wales. We
share a determination to pursue our fictional patients along their respective
journeys, which – as we look ahead – will lead them to their different clinical
consultations, history takings, diagnoses, treatments and, for better or worse,
eventual outcomes. We do not know exactly where our patients’ journeys will
lead them, nor where our own enquiries will lead us. However, we hope to
accompany them to their destinations, and we hope that our readers in turn
will accompany us.

Martyn Evans, Rolf Ahlzén, Iona Heath and Jane Macnaughton

September 2008

REFERENCES
1 Miller J. The Body in Question. London: Jonathan Cape Ltd; 1978. p. 49.
2 Ibid., p. 9.
3 Ibid., p. 10.
4 Ibid., p. 10.
5 Ibid., pp. 10–11.
6 Evans HM. Medical humanities: stranger at the gate, or long-lost friend? Med Health
Care Philos. 2007; 10: 363–72.
7 Sacks O. A Leg to Stand On. New York: Touchstone; 1998.
8 Evans M, Louhiala P, Puustinen R. Philosophy for Medicine: applications in a clinical
context. Oxford: Radcliffe Publishing; 2004.
9 We are grateful to Dr Neil Pickering, University of Otago, who thoughtfully drew our
attention to this fundamental alternative early on in this project.
10 Evans HM, Macnaughton RJ. Should medical humanities be a multidisciplinary or
an interdisciplinary study? J Med Ethics: Med Humanities. 30: 1–4.
 The patients’ stories: Rachel, Jake, Liz
and Jen
ANNE MACLEOD

RACHEL, 10 YEARS OLD

It started one Thursday last autumn. I know it was a Thursday, I didn’t want
to go to orchestra. Mum never lets me miss it.
‘Put your violin in the car, Rachel.’ She was busy unpacking the weekly
shop. She’d been to the newest, cheapest supermarket. Bought oceans of apple
juice. The cupboard would be swimming in it.
‘Can we take one of those cartons? I’m thirsty.’ I grabbed one.
‘Leave them alone! And get that violin in the boot. Did you practise at all
this week? I didn’t hear you.’
‘I hate orchestra.’
‘No, you don’t!’ Mum looked at me, carefully, as if she hadn’t seen me in
a long time. ‘You seem a bit peaky. What’s up?’
‘What’s up?’ I shouted. ‘I’m too tired to go out. I want to go to bed!’
‘You want to go to bed?’ She could not believe her ears.
‘I’m exhausted. Fed up. Starving!’ I was crying now.
‘You can’t be starving. You just scoffed half a packet of Jaffa Cakes!’
I stomped over to the sink and ran the cold tap. Filled a glass. Filled it too
high.
‘Rachel! Watch what you’re doing.’
I slurped till it was safe to lift the glass, then drank the water quickly, all
in one, which left me even more thirsty. That was the funny thing – I couldn’t
remember the last time I didn’t feel thirsty.