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Sociology of Health & Illness Vol. 31 No. 2 2009 ISSN 0141–9889, pp. 278–299

doi: 10.1111/j.1467-9566.2008.01152.x

Review

XXX UK diagnosis: a

1467-9566 Health Ltd preliminary review

0141-9889ofJutel for the Sociology of Health & Illness/Blackwell Publishing Ltd

Sociology Publishing& Illness

SHIL Article

Annemarie

Oxford,

Blackwell

Review Article

Sociology of diagnosis: a preliminary review

Annemarie Jutel

School of Midwifery, Otago Polytechnic, New Zealand

Abstract

Diagnoses are the classiﬁcation tools of medicine, and are pivotal in the ways

medicine exerts its role in society. Their sociological study is commonly subsumed

under the rubrics of medicalisation, history of medicine and theory of disease.

Diagnosis is, however, a powerful social tool, with unique features and impacts

which deserve their own speciﬁc analysis. The process of diagnosis provides the

framework within which medicine operates, punctuates the values which medicine

espouses, and underlines the authoritative role of both medicine and the doctor.

Diagnosis takes place at a salient juncture between illness and disease, patient

and doctor, complaint and explanation. Despite calls for its establishment, almost

two decades ago (Brown 1990), there is not yet a clear sociology of diagnosis.

This paper argues that there should be, and, as a ﬁrst step, draws together a

number of threads of medical sociology that potentially contribute to this

proposed sociology of diagnosis, including the place of diagnosis in the institution

of medicine, the social framing of disease deﬁnitions, the means by which

diagnosis confers authority to medicine, and how that authority is challenged.

Through this preliminary review, I encourage sociology to consider the speciﬁc

role of diagnosis in view of establishing a speciﬁc sub-disciplinary ﬁeld.

Keywords:

medicalisation, diagnosis, history of medicine, classiﬁcation

Introduction

Diagnoses are the classiﬁcation tools of medicine. They do what Bowker and Starr (1999)

refer to as ‘work’: segmenting and ordering corporeal states, valorising some, disregarding

others, and in any case, exerting an important material force. A diagnosis is both the

pre-existing set of categories agreed upon by the medical profession to designate a speciﬁc

condition it considers pathological, and the process, or deliberate judgement, by which

such a label is applied (Blaxter 1978). Diagnosis is integral to the system of medicine and

the way it creates social order. It organises illness: identifying treatment options, predicting

outcomes, and providing an explanatory framework. Diagnosis also serves an administrative

purpose as it enables access to services and status, from insurance reimbursement to

restricted-access medication, sick leave and support group membership and so on.

Being diagnosed gives permission to be ill. What was previously a complaint is now a

disease. Light duty, rest, sick leave, and disability payments are authorised as the individual

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A preliminary review of the sociology of diagnosis

279

becomes patient and (in some cases) pampered. Diagnosis provides what Parsons (1951)

referred to as ‘a claim for exemption’. The individual who is ill ﬁnds him/herself treated,

rather than blamed, for imputed deviance (Freidson 1972). The diagnosis enables the social

incorporation of the afﬂicted individual, with the allowance for, or tools to palliate and

explain, what makes him or her different (deviant) from the norm.

Diagnosis also provides a cultural expression of what society is prepared to accept as

normal and what it feels should be treated. Witchcraft, homosexuality and the tendency of

slaves to abscond (drapetomania) have all been previously diagnosed as disease (Gevitz

2000, Mendelson 2003, Cartwright 1981 [1851]). There are similar contemporary examples

such as erectile dysfunction, excited delirium and undoubtedly others which are likely to look

as value-laden and as culturally fraught as witchcraft to future researchers, once time has

elapsed and some historical distance is available. I will touch on these speciﬁc examples later.

Diagnosis guides medical care. It organises the clinical picture, determines intervention,

and provides a framework for medical education. But diagnosis also deﬁnes professional

medicine. The ability to construct a medical diagnosis from a complaint and physical or

biological ﬁndings sets the doctor apart from the lay person and other professionals,

conﬁrming the medical practitioner’s greater knowledge and status, as well as medicine’s

authority (Freidson 1972). Diagnosis also structures relationships within the profession,

deﬁning who should assume responsibility for particular disorders (Rosenberg 2002):

this complaint to the general practitioner, that one to the immunologist, the haematologist

or the rheumatologist.

On the one hand, diagnosis is interpretive and organisational (Balint 1964). It provides

structure to a narrative of dysfunction, or a picture of disarray, and imposes ofﬁcial order,

sorting out the real from the imagined, the valid from the feigned, the signiﬁcant from the

insigniﬁcant. On the other, diagnosis is an important site of contest and compromise, because

it is a relational process with different parties confronting illness with different explanations,

understandings, values and beliefs. The misﬁt between patient and medical explanatory

models may result individually in unsatisfactory therapeutic values and goals (Kleinman

et al.

1978), or collectively generate politicisation of illness, with social movements and

disease advocacy groups battling for recognition, funding and other forms of support

(Brown and Zavestoski 2004).

Brown (1990, 1995, 1987) is perhaps the only scholar to have made an explicit call for a

sociology of diagnosis, arguing that understanding diagnosis provides an important insight

into how we understand disease, health, illness and the forces which shape our knowledge

and practices. However, the sociology of diagnosis does not have a clear identity or literature,

hanging more on the coat tails of medicalisation, disease theory and history of disease. It’s

not that diagnosis has been excluded from medical sociology, it’s simply that it has been

well buried in these and other areas of focus, and whilst pivotal, it hasn’t been clearly

isolated from these interests. Extirpating diagnosis and revealing it for speciﬁc discussion

provides an opportunity to study an array of topics from a different perspective: for example,

patient-doctor interaction, medicalisation, illness experiences, health social movements and

disease recognition.

This paper aims to display a range of works discussing diagnosis in order to encourage

sociology to deﬁne and analyse the speciﬁc role of diagnosis in medical sociology. It is not

the purpose of this paper to deﬁne the ﬁeld, rather, to draw together a number of threads

of medical sociology that potentially contribute to this proposed sociology of diagnosis.

In constructing a review of pertinent articles there is nonetheless a need to be selective,

because the range of topics to consider is immense. Diagnosis is, as I have observed above,

both a process and a label. As a process, it is the method of evaluating and adjudicating

280

Annemarie Jutel

the physical complaint. But diagnosis is also the actual category assigned to a constellation

of complaints. For the purposes of this paper, I will restrict myself to categorisation, rather

than process, which should be the topic of a future paper. In the introductory paragraphs,

I have located the interest of this area of study in understanding how medical practice and

authority are simultaneously exercised and challenged in contemporary Western settings.

This is why I have selectively chosen to focus on such texts which help to elucidate the role

of diagnosis in producing/reproducing medicine and its authority or challenges thereto. My

review therefore focuses on the history of diagnosis: both how disease names came to be

part of Western medicine, and how individual diseases emerge. It then explores how

diagnostic labels both reinforce and contest medicine’s authority.

The ﬁrst part of this paper looks at medicine and its relationship to diagnosis. I consider

how diseases are named by exploring the place of diagnostic labels in medical history.

Diagnosis has not always played a central role in medicine, and I describe how nomenclature

and classiﬁcation came to be prominent in the practice of medicine. I use two individual

disorders – post-traumatic stress disorder and Alzheimer’s disease – as heuristics for

demonstrating how the emergence of disease entities can be framed by, and in turn frame,

social and cultural values. Further, I consider how medical authority and medicalisation

both enable, and are enabled by, diagnosis.

In the second part of this paper, I investigate diagnostic tension. The illness-disease

dichotomy is my starting point. I discuss the differentiation between these two terms in

order to describe the challenges present in reconciling lay and medical perspectives on

sickness. I investigate contested diagnoses, and the role of social activism in both the

emergence of some disease labels, and the removal of others. And ﬁnally, I examine the

promotion of diagnostic categories by non-medical agents. The conclusion reﬂects upon

how the sociology of diagnosis has a contemporary and immediate relevance to health

policy, practice and outcomes.

Medicine and diagnosis

The naming of diseases

Ancient Greek medicine, according to historian Ilza Veith (1981), did not have a medical

terminology: ‘So long as medical knowledge was restricted, a narrative descriptive style was

used to evoke a picture of a disease, where nowadays one word, a simple disease name,

would sufﬁce’. The lack of nomenclature reﬂected a lack of systematic knowledge of the nature

of disease, which, according to Fisher-Homberger, a number of 18

century physicians

threw themselves at correcting. Thomas Sydenham, who many, including Foucault (1975), see

as the father of classiﬁcatory medicine, sought ‘the improvement of physick’ (Sydenham

1742: iiv–iv) by classiﬁcation. It provided the doctor with a tool to ‘distinguish [a disease]

from all other distempers’ (1742: xvi). Sydenham followed a botanical model of classiﬁcation,

listing the characteristics of diseases as one might the petioles or the sepals of a ﬂower. Fisher-

Homberger (1970) explains that nosology served to further medicine as a science, providing

a linguistic means to rein in its unintelligible and confused inconsistencies (1970: 401).

Not all doctors felt that disease was ontological, or a natural entity waiting to be named,

as assumed by Sydenham and many of his followers. Broussais (1828) for example, vehemently

opposed such a conceptualisation, and believed instead that organs transmitted stimuli

from one part of the body to another, causing and propagating illness.

Regardless of the epistemological perspective which underpinned the various approaches

to diagnosis, this classiﬁcatory project saw medicine shift its focus from individual symptoms

A preliminary review of the sociology of diagnosis

281

to groups and patterns of symptoms that doctors could reliably recognise. Clinical medicine,

according to Foucault (1963), removed the symptom from its previously supreme position,

seeing it instead as simply one element in a symptom cluster which would constitute the

disease.

Historian Lester King (1954) describes historical disease construction as pattern recogni-

tion which takes on new and different forms as knowledge changes:

What one epoch calls a disease is, to a later period, only a symptom. A pattern has

reasonable stability only when its criteria are sharp, its elements cohere, and its utility in

clarifying experience remains high. Let these factors become blurred, and the erstwhile

disease, as a well-deﬁned and useful class, will melt away (1954: 202).

King’s words reﬂect the fact that medicine is temporally situated, and makes its diagnoses on

the basis of the technology and values available at a speciﬁc point in time. As an

unidentiﬁed writer penned in the British Medical Journal in 1886, ‘The imperfection of

our medical vocabulary is not a matter for surprise. It is the measure and gauge of the

imperfection of our medical knowledge, and only perfect knowledge admits of a perfect

nomenclature’ (Anon 1886: 1116). Rosenberg describes a range of technological innovations

which served to present objective images of disease, such as the ECG, the X-ray and the

manometer, and to ‘operationalize’ diseases, providing a deeper texture and substance to

their description (Rosenberg 2002).

Diagnoses also emerge as individuals, professions or society dynamically modify the

boundaries of what they consider respectively normal and problematic. Aronowitz (2001)

argues that ‘although biological and clinical factors have set boundaries for which symptoms

might plausibly be linked in a disease concept, social inﬂuences have largely determined

which symptom clusters have become diseases’ (2001: 803). The status of homosexuality in

the Diagnostic and Statistical Manual of Mental Disorders (DSM) is one useful example.

Kirk and Kutchins (1992) expose the degree to which political battles and controversies

shaped the taxonomic project of modern psychiatry, using the status of homosexuality in

the view of American psychiatry as one example amongst others. During the preparation

of the DSM-III, gay activists adamantly objected to homosexuality’s then-categorisation

as mental illness. They sought public acknowledgement of their position via disruptive

protests at the American Psychiatric Association conventions. The cumulative effect of

their collective action was compounded by media attention and the personal ambition of

the chair of the committee appointed to oversee the DSM revision process and resulted in

the removal of homosexuality as a diagnostic category.

Seeking agreement about what conditions should be awarded diagnostic status serves a

range of practical purposes. Bowker and Star (1999) write that classiﬁcation ‘provide[s] a

stabilizing force between the natural and the social worlds. [It holds] in place sets of

arrangements that allow us to read the natural as stable and objective and the social as

tightly linked to it’ (1999: 87). Diagnostic classiﬁcation satisﬁes a range of needs, from

health data collection, to the determination of treatment protocols, public planning, and

marketing strategy (Bowker and Star 1999). As a classiﬁcation project, diagnosis captures

and serves different ideologies. Hacking (2001) explains that ‘the idea of nature has served

as a way to disguise ideology, to appear to be perfectly neutral. No study of classiﬁcation

can escape the obligation to examine the roots of this idea . . . no study of the word

“natural” can fail to touch on that other great ideological word, “real”’ (2001: 7). Hacking’s

discussion points to the fact that classiﬁcation is seeking out the picture of an object, a

‘ﬁxed target’, which is true to nature.

282

Annemarie Jutel

The

International Classiﬁcation of Diseases

(ICD) is the diagnostic inventory which

underpins medical practice. Despite the range of uses which medicine makes of it today, its

original purpose was to produce mortality statistics. Each revision of the ICD starts with

a detailed historical exposé of its genesis and subsequent revisions, given the inﬂuence that

the decisions taken at the time of each revision hold over its subsequent editions. Many of

its contemporary categories are residual, hearkening back to historical ways of clinical

practice: symptom-focused, ontological or anatomo-pathological medicine. Blaxter (1978)

has written that contemporary diagnostic categories are best viewed ‘as a museum of past

and present concepts of the nature of disease’ (1978: 10).

Blaxter (1978) also points out the complexity and fragmentation of diagnoses which

reﬂect a similarly disjointed body of knowledge in medicine, a point which Bowker and

Starr (1999) underline as well. A glance through the ICD, for example, reveals diagnoses

assembled on the basis of cause, description, site or symptom, syndrome, variation from

statistical norm (hyper and hypo this-or-that, under-or over-weight) and even treatability.

She captures the fractured nature of diagnostic categories by quoting Kendall, who

charmingly writes:

In fact the diseases we currently recognise are rather like the furniture in an old house, in

which each generation has acquired a few nice pieces of its own but has never disposed

of those inherited from its predecessors, so that amongst the inﬂatable plastic settees and

glass coffee tables are still scattered a few old Tudor stools, Jacobean dressers and

Regency commodes, and a great deal of Victoriana (Kendall in Blaxter 1978: 10).

This reference to the historicity of diagnostic categories provides a convenient introduction

to the next section, in which I explore how speciﬁc diagnostic categories have emerged at

particular junctures, stemming from political action, cultural context, and technological

advancement.

‘New’ diseases

The emergence of speciﬁc diagnostic labels provides a heuristic to the student of diagnosis.

The process by which particular conditions become ﬁrst described in medical terms, and

secondly incorporated as disease concepts, elucidates how social elements inﬂuence and

frame diagnoses, and lead decision makers to view a diagnosis as validating a reality which

is simply waiting to be discovered (Goode 1969), or which can be taken for granted (Scott

1990). This speaks to Hacking’s comments on the intense interest in the classiﬁcation of

people. The focus is on ‘a picture of an object to be searched out, the right classiﬁcation,

the classiﬁcation that is true to nature, a ﬁxed target if only we can get there’ (Hacking

2001: 11).

Brown (1995) has described the stages of social construction of disease that are typically

part of the disease discovery process. These include lay discovery, social movement,

professional and organisational factors. The histories of individual diseases illustrate this

social construction quite usefully.

Wilbur Scott’s account of Post Traumatic Stress Disorder’s incorporation into the DSM-

III provides a detailed account of the considerable individual and collective effort required

to obtain acknowledgement that the psychological distress of numerous Vietnam veterans

was something different from the psychosis, cowardice, or malingering, to which it had

previously been attributed (Scott 1990). The effort was political, involving negotiation,

relationship management and persuasion. Scott recounts this as an example of how diagnosis

brings conditions forward as ‘always-already-there objects in the world’ (1990: 295), via a

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