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‘The expertness of his healer’: 1­–17

© The Author(s) 2017

Diagnosis, disclosure and the

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DOI: 10.1177/1363459317745956
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Annemarie Jutel
Victoria University of Wellington, New Zealand

Abstract
Diagnosis is one of medicine’s most important tools. It structures the relationship
between patient and diagnostician, organises illness and provides access to resources.
In this article, I reveal how the manner in which a serious diagnosis is revealed creates a
kind of ‘epistemic posture’ reinforcing the power of medical knowledge, and contributing
to medical authority. To achieve this, I explore historical material written by and for
doctors about the disclosure of difficult diagnoses. Using historical data for sociological
purposes follows Zerubavel, who asserts that phenomena should be studied across
eras, media and cultures. I have chosen to focus on how diagnostic disclosure, as
described by mid-19th to mid-20th century doctors, serves to promote the profession
of medicine. The means of revealing a diagnosis served as a demonstration of, and a
means for deflecting threats to, medicine’s esoteric nature. The historical data provide
a novel approach for understanding how diagnosis operates, even today, to confirm the
professional status of the doctor.

Keywords
doctor–patient relations, epistemic posture, medical profession, sociology of diagnosis,
truth-telling

Diagnosis is a powerful social tool with many functions. These include inter alia explain-
ing illness, identifying treatments, predicting outcomes and allocating resources.
Diagnosis contributes to social order: capturing the fringes of putative normality (e.g.
ageing, shyness or low libido) in medical terms (Fox, 1989; Jutel, 2010; Scott, 2006).
Diagnosis defines which specialism should handle which disorders, provides

Corresponding author:
Annemarie Jutel, Faculty of Health, Victoria University of Wellington, PO Box 600, Wellington 6140, New
Zealand.
Email: [email protected]
2 Health 00(0)

frameworks for communication, structures relationships and distinguishes professional

from lay (Freidson, 1972; Rosenberg, 2002).
The sociology of diagnosis is concerned with how diagnosis structures the experience
of health, illness and disease, and contributes to the organisation of medicine. Diagnosing
a disease, or putting a name to an ailment, is a matter of particular interest to sociologists
and has been so for some decades now (Blaxter, 1978; Brown, 1995; Jutel, 2009, 2015;
Jutel and Nettleton, 2011; Mcgann and Hutson, 2011). However, less attention has been
paid to the actual moment a serious diagnosis is announced, and what social functions
are enacted at the moment of this announcement. A number of social scholars have
skirted around the individual impact of the diagnostic utterance, in particular, in relation
to biographical disruption and identity shifts (Bury, 1982; Charmaz, 1983), the illness
narrative (Blaxter, 2004; Bury, 2000; Frank, 2000) and awareness of dying (particularly,
Glaser and Strauss, 1968), and truth-telling in medicine (Sokol, 2006; Tuckett, 2004).
And others have written about the impact of the diagnosis on the personal experience
of illness. Balint (1964) underscored its importance in his 1964 book, The Doctor, his
Patient & the Illness. His maintained that patients presented their symptoms as diagno-
ses, negotiating and bartering with the doctor until such time as the diagnosis proposed
by the doctor as an explanation for the symptoms resonated enough with the patient that
she was able to accept the formal medical diagnosis as probable and plausible. According
to Balint, the most pressing problem for the patient was

the request for a name for the illness, for a diagnosis [italics in the original]. It is only in the
second instance that the patient asks for therapy … finding ‘nothing wrong’ is no answer to the
patient’s most burning demand for a demand for a name for his illness. … that the statement
‘nothing wrong’ sometimes really means that medicine does not know what is wrong in his
particular case. (p. 25)

However, this need for diagnosis is a point at which medical authority often domi-
nates rather than negotiates (e.g. Dumit, 2006; Frank, 1995; Leder, 1990; Nettleton,
2006). Frank describes it as a ‘narrative surrender’: a point at which medicine wrests
control from the individual, and transforms a story of dysfunction into a medical one,
where diagnosis replaces symptoms in the framing of illness.
The encounter of these two sociological concerns – the disruption engendered by seri-
ous illness and the exercise of authority in the process of diagnosis – is the focus of this
article. I have elsewhere discussed how the revelation of a dire diagnosis by French doc-
tors underlines a long-held belief in the moment of diagnosis as transformative and dan-
gerous. I extend this reflection in this article by exploring how doctors describe
announcing a serious diagnosis as constitutive of the medical profession, differentiating
the doctor from the patient and from other health practitioners. I will describe what I call
an ‘epistemic posture’: a particular manner, tone and subtlety of revelation that contrib-
utes to the esoteric position of the doctor, agent of medicine, and justifies restraint in
communicating diagnosis to the patient.
The importance of the diagnostic announcement in the professional identity of the
doctor was already highlighted as Hippocratic writings. The probably mid-5th century
treatise, Prognosis, described the importance of naming a disease:
Jutel 3

… if [the doctor] is able to tell his patients when he visits them not only about their past and
present symptoms, but also to tell them what is going to happen, as well as to fill in the details
they have omitted, he will increase his reputation as a medical practitioner and people will have
no qualms in putting themselves under his care. (Hippocrates, 1983: 170)

I will pursue here the line prompted by this Hippocratic document, demonstrating
how pronouncing the diagnosis is connected with professional status and power. I will
achieve this by exploring words of, and to, doctors about whether or not they should
reveal a diagnosis to the patient. I focus particularly on how the way in which the diag-
nosis is announced to a patient (or not) buttresses the profession of medicine. By study-
ing the way doctors describe their rationale, we can learn much about how doctors see
themselves, their patients and their competitors, their role and the place that diagnostic
knowledge played, and continues to play, in maintaining their respective standing.
I place my question in an historical context. The reason I do so is to attempt to estab-
lish the presence of social patterns (Zerubavel, 2007). Zerubavel’s social pattern analysis
is an approach inspired by Simmel, which seeks to understand a social structure or phe-
nomenon by studying it as broadly as possible, across as many contexts as possible (in
this case, predominantly historical contexts). Social pattern analysis is indifferent to ‘sin-
gularity’, or to what appear to be unique and discrete instantiations of particular behav-
iours. Rather, in social pattern analysis, one is ‘purposely oblivious to the idiosyncratic
features of the communities, events or situations that they study, looking for general
patterns that transcend their specific instantiations’ (p. 133). The comparisons which
emerge from social pattern analysis are designed to ‘highlight the formal commonality
rather than the cultural, historical or situational singularity of the various specific mani-
festations of that pattern’ (p. 136). It is an approach which has been used by sociologists
of diagnosis (see for example, Degloma, 2009 on post-traumatic stress disorder (PTSD)
and my own previous writings on diagnostic disclosure (Jutel, 2016b)) to explore various
aspects of diagnostic categories, processes and consequences.
This purposeful disregard for individual context in order to reveal broader patterns is
part of a wider project on the revelation of diagnosis which considers the representation
of the diagnostic moment across media (film and television (Jutel and Jutel, 2017), fic-
tion (Jutel, 2016a)) and contexts (Jutel, 2016b). Here, I add an historical context. Using
historical data for sociological ends also fills the useful function of providing critical
distance (Martin, 1992). It is more difficult to discern social content in those actions and
practices which are close to us. This also follows Husserlian thought which postulates
that the phenomena we study are anchored in sedimented tradition, suggesting a need to
look backwards in order to explicate what we observe today (Husserl, 1970).

Methods
This article presents a far-reaching survey of publications for doctors (both medical and surgi-
cal), written, for the most part, by doctors. The historical range and the diversity of doctors
from myriad specialisations and professional categories constitute the broad-ranging context
against which to understand diagnostic revelation. These sources were obtained from a vari-
ety of libraries – virtual and real – and include material from 1844 to the early 1960s.
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To locate documents, I started with a contemporary search in PubMed. Using the

medical subject heading (MeSH) ‘truth disclosure’, I identified works from which I
could then extrapolate more search terms and progressively reveal more pertinent infor-
mation, iteratively locating more material, but also more potential search terms for fur-
ther consideration. The range of terms which turned out to be helpful in locating material
included the following: patient–doctor relations; ethics; difficult, hopeless or dire diag-
nosis; and sick room. I also searched specific diagnoses which had been highlighted as
being ‘dire’ or ‘hopeless’, such as tuberculosis, diabetes and cancer. The database
searches were only a starting point for locating key texts. I also manually searched the
shelves near relevant texts, in open-stack collections and digitally searched them in
closed stacks. I checked all reference lists and in-text references and secondary sources
on diagnostic disclosure in terminal illness. This resulted in a total of 79 documents:
scientific articles, editorials and opinion pieces, books and book chapters.
I included in my analysis any material in which the author wrote about revealing a
serious diagnosis, whether it was in relation to the impact on the patient, the manner in
which it should (or should not) be revealed or the burden of having to decide what to do.
I was particularly interested in comments by authors about if, how and when a diagnosis
should be pronounced or withheld. I used a standard iterative process of reading, re-
reading, identifying themes and grouping papers according to these themes. To be sys-
tematic in this iterative approach, I used Evernote, my note-taking software, as a data
analysis system, creating ‘tags’ for each paper as I read it and as the tags came to mind.
For each subsequent paper, I would consider whether the tags already created could be
reapplied to the new paper, or if new tags were required, in which case I created them.
After the completion of the tagging exercise, I looked at the tag list thus created. First,
and independently of the papers, and following Ockham,1 I examined this list to see
whether any higher level classification could be devised. Second, I returned to each
paper to see whether and how it would fit within the thus-devised classification, adjust-
ing the thematic tagging (classification) system until fit was achieved.
Diagnostic disclosure, as presented by these documents, promoted the profession of
medicine by transforming the doctor into purveyor of truth, vesting him with therapeutic
powers, differentiating him from other practitioners and distinguishing him from the lay
person (I use the generic ‘he’ because there were no female authors in the data set).
Importantly, however, as we will see below, the discretion of the doctor, in contrast to the
behaviours of other health practitioners, created an epistemic posture which differenti-
ated the doctor from his rivals.

Purveyors of truth
The foundation for professional power in this material is contained in the conflation of
diagnostic revelation and ‘truth’ which pervades 19th and early 20th century writing and
which I will describe below. Not only does this reveal the moral content of the clinical
relationship, and instilling the doctor with a ‘God-like’ authority, but it punctuates how
medicine controls the ‘facts’ of disease.
Already, as I noted above, the MeSH term for diagnostic revelation is referred to as
‘truth disclosure’. By characterising the exchange of information as ‘truth’ is to convey
Jutel 5

a certainty, or omniscience, that cements medical authority. Moreover, not only detaining
the truth, but determining how it should be meted out, adds to this authority. The writing
from doctors from this era showed that the truth was tightly controlled by medicine:
dispensed with discretion, oft-times modified, concealed or diluted, according to the
doctor’s judgement. Dr J. Brown (1862) explained that receiving the truth should not be
taken for granted by the patient as an expectation of a medical consultation:

to tell the whole truth – that is for [the doctor’s] own wisdom and discretion to judge of; only,
never let him tell an untruth, and let him be honest enough when he can’t say anything definite,
to say nothing. It requires some courage to confess our ignorance, but it is worth it. (p. 33)

Connecticut doctor, Worthington Hooker (1849) believed that deception was some-
times required. He wrote,

It is not to be expected of [the doctor] that he shall always tell each patient just how his case
stands. His own mind is often filled with conflicting hopes and fears, and he cannot decide
clearly what the probabilities are in many cases and if thinks that he can do so, he may be very
much mistaken. (p. 381)

Some went so far as to recommend lying. In 1909, Richardson, a professor of surgery

at Harvard, advised medical students that lies could help. If it injures no one, he mused,
‘are not the objections to a lie hypocritical, unjustifiable, and beyond common sense?’
(Richardson, 1909: 433). A patient could be made hopeful by being led to believe they
had a different (incorrect) yet plausible diagnosis. He reminded his students that ‘… a lie
must be well told if told at all’ (pp. 436–437).
In contrast, one of the more adamant advocates of diagnostic disclosure, Harvard pro-
fessor, Dr Richard Cabot (1909), underscored the moral duty of the doctor, and maintained
that diagnostic disclosure was obedience to God. ‘God cannot lie; and man cannot work
with God and lie’, he wrote (p. 146). He argued that patients generally knew the truth,
regardless of what the doctor said, and could often see straight through any white lies.
Several 20th-century authors highlighted their concern about lay misinterpretations of
diagnosis. For example, surgeon Franklin Balch (1929) believed in telling the patient the
‘truth’, but used dissimulation nonetheless. He never said ‘cancer’ if he could avoid it.
‘To the layman it means almost a sentence of death, and to take away hope when we have
simply removed an epithelioma is inexcusable’ (p. 131). Laurence Henderson (1935)
reported that ‘It is meaningless to speak of telling the truth, the whole truth, and nothing
but the truth, to a patient … a sheer impossibility.’ He then explained that the amount of
variation in the individual diagnosis and between patients made a mockery of any sup-
posed truth.
It would be many years before discussions of diagnostic disclosure would be broad-
ened beyond the truth/falsehood discourse. In 1955, two New York-based professors of
surgery edited a collection of essays titled ‘Should the Patient Know the Truth?’ Many of
the essays challenged the focus on truth. ‘The question, should the patient know the
truth? obscures, in the categorical way it is put, the issue at hand’ wrote Isle Wolff (1955)
(a nurse) in a chapter titled ‘The Magnificence of Understanding’ (p. 29). Wolff con-
cluded her essay by reframing the question as a challenge:
6 Health 00(0)

Am I ready and willing to be with the patient on his last road, willing to accept his feelings,
different as they might be from mine, willing to respect equally his wish to be told or to be
spared? (p. 38)

Later publications move away from the word ‘truth,’ making instead reference to the
diagnosis being ‘unspoken’ (Hallenbeck, 1960), and about the patient being ‘told’ (Litin,
1960; Rynearson, 1960; Westberg, 1958). The Mayo Clinic also published a collection of
essays only 5 years later with the notably different title ‘Should the Patient Be Told?’
(Litin et al., 1960), shifting the location of the discussion of diagnostic disclosure from a
moral to a clinical position. This is not to say, however, that the moral content of the
disclosure decision disappeared. I will discuss this further in the conclusion.

Therapeutic powers
A measured approach to diagnostic disclosure not only vested the doctor with authority
but also with the ability to influence clinical outcomes by the manner of disclosure.
Revealing a diagnosis could hasten the end of life, according to Dr Harrison (1844):

Encouragement, not despair should be awakened by his tones, his looks, his every act and effort
to rescue sinking, trembling, dying man from the grasp of the king of terrors. (p. 10)

Agreeing, Styrap (1878) saw life being in the doctor’s hand, affected by his or her
words. He wrote, ‘… the ebbing life of a patient may be shortened not only by the acts,
but also by the words and manner of the doctor’ (p. 41). Writers referred to diagnosis as
‘a cruel blow, a shock’ (Richardson, 1909), a ‘sentence of death’ (Emerson, 1929) or a
‘bludgeoning process’ (Seelig, 1943). Dr Daniel Webster Cathell (1885) expounded the
impact of the doctor’s pronouncements:

… prudence may require you to conceal the danger of death from the patient, lest he at once
give up all hope and be overcome by apprehension and terror; fear may exercise a deadly
influence [italics mine], and has often rendered mild diseases fatal. (pp. 107–108)

Schofield (1906) believed that ‘a doctor is weighed in the balance as no other man is
… All he does has a double force’ (p. 113). The doctor’s responsibility was to soften the
clout of his words: ‘… And while telling no lies, [the doctor] is perfectly consistent and
only telling as much of the truth as is good for his patient to know; and of this, rightly or
wrongly, he must be the judge’ (pp. 95–96).
The therapeutic impact of diagnostic could also be salutary, even to the extent of sav-
ing the patient. Knowing the diagnosis, for example, might help enlist patient participa-
tion in difficult treatments or prevent spread of disease. M.H. Richardson (1909) wrote
that if by naming the disease the patient could be scared into undergoing surgery, then the
diagnosis should be given, as did Seelig many years later. ‘The patient should not be told
that his disease is cancer except in those uncommon instances in which special circum-
stances are present or in which his cooperation can be won only by telling him ‘the nature
of his disease’ (Seelig, 1943: 33).The diagnosis could bring a recognition of medicine’s
Jutel 7

potential to an otherwise reluctant patient. ‘Give a name to [the patients’] disease and
they feel better’ (Sperry, 1950: 110) said the dean of the Harvard School of Divinity to
medical students.

Differentiation from other practitioners

Revealing the diagnosis was regularly mentioned as a means for differentiating doctors
from other practitioners. Little (1926) explained that

The fatal weakness of the unqualified practitioner is not his lack of a medical degree, but his
lack of knowledge of disease … To contend then that the public interest can possibly be served
by exempting anyone who is to enjoy the status of a registered medical practitioner, from
training in those sciences by means of which alone a diagnosis of disease can be made is on the
face of it is ridiculous. (p. 8)

However, it was not just the ability to diagnose which mattered, it was also the way in
which diagnosis was revealed. The American Medical Association made this clear in its
Code of Ethics, ‘[the physician should] … not be forward to make gloomy prognostica-
tions’, in order to avoid ‘magnifying the importance of his services in the treatment of
cure of the disease’ (p. 2). This was a direct reference to what was widely referred to as
‘quacks’ who were characterised as loud and indiscrete, or making ‘great professions and
rosy promises’ (Cathell, 1885: 201). ‘Professional tact and business sagacity’ wrote
Cathell ‘is as necessary to the physician as the mariner’s compass is to the navigator’ (p.
9), highlighting the distinction between the professional (tactful) and the quack (noisy).
As he described the set-up of the doctor’s office, the practices espoused by the doctor and
the doctor’s approach to diagnostic disclosure, he recommended discretion and under-
statement. A physician’s office should have evidence of medical journals and ‘aids to
precision in diagnosis, diplomas, instruments, certificates of society memberships’ but
should avoid ‘a quackish display of the latter’ (p. 49).
This notion that only formally trained and registered doctors could be trusted to give
an ‘honest opinion’ arises again and again in the writings of doctors who caution against
quackery. For example, Dr Saundby (1907) insisted that exaggerating a diagnosis is ‘uni-
versally the trick of the quack, who seeks, by frightening his patient, to get him more
completely in his power’ (p. 105). Palfrey (1925) referred to ‘magnifying, either con-
sciously or unconsciously, the seriousness of their patients’ conditions … [as] a heartless
form of quackery’ (pp. 20–21). Johnson (1936) added,

One of the earmarks of the quack is to exaggerate the gravity of a patient’s condition in order
to get credit for a cure that Mother Nature could have accomplished quite well unaided. It is at
least absolutely dishonest, as well as cruel, thus to play on the emotions of the family. (pp.
127–128)

Boston doctor, Richard Cabot (1903), who wrote in favour of sharing diagnostic
information with these patients nonetheless underlined, as had Gould before him, the
pretence of ‘pretending omniscience to retain [the] patient’s confidence’ (p. 345). He
8 Health 00(0)

revealed that ‘among intelligent laymen, far more frequently than is supposed, one finds
that such sham certainty without the reality of knowledge and conviction is at once
detected’ (p. 345).
Such differentiation persisted well into the 20th century. Sperry (1948) maintained
that discretion in diagnostic pronouncement was the sign of the true doctor:

My observation is that many wise physicians and surgeons are cautious about claiming finality
for their diagnoses and prognoses. In the order of nature, there are run-of-the-mill diseases that,
humanly speaking, must apparently go their normal course to the end. It is a matter of common
knowledge that the faith-healing sects in this country have made much of their capital out of
hasty and erroneous diagnoses. (p. 987)

R.H. Blum (1960) maintained that diagnosis confirmed medical status. ‘The physi-
cian who demonstrates his knowledge by providing a diagnostic label also serves to
reassure the patient of the expertness of his healer and his capacity to protect the patient
… diagnostic information is a demonstration of knowledge and potential power’ (p. 50).
These words encapsulate what Elliot Freidson (1972) later theorised: ‘Where illness is
the ubiquitous label for deviance in an age, the profession that is custodian of the label is
ascendant’ (p. 244). Freidson further asserts as illness labels progressively replace legal
and moral ones, the institution of medicine becomes strengthened as an institution of
professionalised control.

Patient–doctor differentiation
As well as distinguishing the trained doctor from the quack, the authority to diagnose
was touted as a way of distinguishing patient from physician. This dynamic shaped
beliefs about whether a patient should be told of his or her diagnosis, or even whether
their interpretation of the malady should be heard. The direction in which information
circulated contributed to making sense of the social relation between patient and doctor.
A.B. Crosby (1877) placed limits on what he felt that a doctor should tell a patient, but
insisted that the patient should withhold nothing, maintaining that ‘A man may deceive
his clergy man or his wife without physical injury, but if he deceives his doctor, he is a
fool’ (p. 28). Similarly, Styrap (1878) felt that the patient owed full disclosure to his or
her doctor, while the doctor could decide how much to reveal. He advised ‘Patients
should faithfully and unreservedly communicate to their medical adviser the supposed
cause of their malady’ (p. 44). He described the ideal relationship between patient and
doctor as one in which the patient owed full disclosure to the doctor, while the doctor
could decide how much to reveal. He advised that ‘Patients should faithfully and unre-
servedly communicate to their medical adviser the supposed cause of their malady’ (p.
44) Yet, it was ‘[the doctor’s] duty carefully to guard himself in this respect, and to avoid,
as far as possible, everything which has a tendency to discourage the patient and depress
his spirits’ (p. 41).
In a book written for patients, Hadra (1902) prompted,

Let the doctor, who has to give you his opinion, have unembarrassed freedom; do not press him.
In some instances, he will have good reason to hide his opinion from you, while he will
Jutel 9

communicate it to a friend or relative. He will be wise to spare you the pangs of knowing your
own desperate state. (pp. 112–113)

Robinson’s (1939) A Study of the Social Aspects of Illness highlighted how medical
authority lead to the flow of information from patient to doctor (and not necessarily the
other way around):

The natural authority of the doctor, the confidence the patient feels in his professional
knowledge, his unselfish, disinterested respect for intimate communications, the tradition, so
long accepted that the relationship between doctor and patient is confidential, and the sentiment
of the patient that the more the doctor knows about him, the more helpful he can be, all these
attitudes and assumptions establish a basis for free and unbiased communication that is possible
in few other human situations. (p. 2)

This exchange, however, is unilateral. Even while the idea that the patient should
provide as much information as possible, the doctor is not required himself to provide as
much information by return.
Lapham (1937), for example, quoted Oliver Wendell Holmes who said, ‘the patient
has no more right to all the truth than he has to all the medicine in your saddlebag. He
should only get so much as is good for him’ (p. 47). He also made clear that information
from the patient about what she thinks ails her must be used very judiciously:

But the history which is begun by the patient giving his own diagnosis is very apt to be a
hindrance rather than a help to the physician, and when a history is so begun the physician must
ever be on his guard lest he unconsciously follow along the line of reasoning of the patient, or
allow himself to be prejudiced or influenced by the diagnosis given by the patient. (pp.
20–21)

The doctor was cast as an important educator, able to dispel the angst harboured by
the patient as a result of incomplete knowledge of pathology. To this end, Dr Frank L.
Rector (1936) advocated disclosure as patient education, writing that ‘As the basis of
fear is ignorance and as ignorance has its roots in mystery, it would seem logical to
assume that fear would be banished when mystery is dispelled’ and with this he held that
revealing the diagnosis would end the patient’s worry. ‘Some wag has said that an
American cannot worry more than three days over anyone thing. If this is true, the cancer
patient’s worry will be over in a short time, and his response to treatment will be favour-
able’ (p. 6).

Discussion
Diagnosis plays a dominant role in confirming medicine’s status. As Owen Whooley
(2013) has written, medicine’s grip on professional power, its ascension to the top of the
hierarchy of the professions, was obtained via the control of the episteme. To elbow out
the homeopath, the hydropath, the magnetiser and the Fletcherites, medicine claimed the
terms of knowledge. If they could control the means by which disease was understood,
the facts of disease, then they could control its management, its therapies and its institu-
tions. Diagnosis was in the 19th century, and is now, vital to the episteme.
10 Health 00(0)

Diagnosis has already been recognised for its role in demarcating a profession. From
Hippocrates to the present era, the ability to name a disorder has conveyed a significant
amount of authority. We have seen previously how Friedson explained the authority
afforded the diagnostician. Increasingly, diagnostic naming becomes a point of tension
precisely because of its link to resources, power and legitimisation (Dumit, 2006).
Furthermore, numerous corporate entities (notably, but not only, the pharmaceutical
industry) are newly aware of the power linked to diagnosis and have sought to exploit it
by encouraging disease awareness and self-diagnosis (Ebeling, 2011; Lupton and Jutel,
2015).
Custodianship, as underlined by the preceding pages, includes diagnostic delivery,
which transforms the doctor into purveyor of truth, as non-quack and not lay. The impor-
tance of this role is validated not only by the doctor’s knowledge of diagnosis and disease
but also the manner in which he or she delivers that knowledge, pronounces the diagno-
sis, what I have referred to as ‘epistemic posture’.
As so many of the documents consulted herewith underline, the scientific underpin-
ning of the diagnostic activity provides the foundation for the profession of medicine.
However, information flow (who tells whom what) also punctuates what it is to be a
professional doctor. The patient is bound to ‘tell all’, as Styrap admonished, in relation
to what ails her, while the doctor can, according to Lapham and others, decide what
information is germane. This is more than (but of course includes) a simple paternalistic
approach to the individual patient; it is a discretionary approach which protects the
guardianship of information held by the members of the profession.
Already, as I presented above, the fact that diagnostic information should be referred
to as ‘truth’ punctuates the esoteric nature of the medical classification. Medicine
becomes a purveyor of authentic knowledge, God-like, as Cabot insinuated above, unlike
the unregistered quack or the uninformed lay person. Few, if any, of the critical scholars
on ‘truth-telling’ in medicine have actually questioned the entanglement of the terms
related respectively to revelation and to truth, to concealment and to falsehood (Sokol,
2006; Tuckett, 2004), using these terms interchangeably themselves to characterise the
problem of communicating a difficult diagnosis. This is a subject that I have recently
addressed recently elsewhere (Jutel, 2016b).
The medical historian, Naomi Rogers, has come closest to separating out these terms,
and her analysis is insightful for the picture I am trying to convey of the ways in which
diagnostic disclosure was (and still is) a means for maintaining medicine’s exclusive
right to practice. Rogers suggests that we can learn much from medical ‘silence’: the
unspoken, and the reticence of doctors to tell the ‘truth’ about patients’ diseases and their
future (Rogers, 2008). Rogers uses emphatic quotation marks when she refers to truth
and lies, and while she does not actually unpack the moral content of these words and
how they contribute to esoterism, she extends the debate by recognising the ‘unspoken’
and the ‘concealed’ in their own terms, and in explaining the role of the concealment in
the promotion of the medical profession.
Scientific respectability, writes Rogers, was ethically defined by how it managed the
information to which it was privy and the intensity of its proclamations. While her dis-
cussion focusses on public comments about medical science (as opposed to the one-on-
one diagnostic moment), she underlines how silence is nonetheless an important part of
Jutel 11

professional ‘etiquette,’ present in both public health and, I argue, the doctor’s consulting
rooms. We already see Cathell’s comments above, which exemplify how discretion con-
tributed to the constitution of the successful physician.
Discretion, as Cathell described it, referred not only to the doctor’s behaviours and the
set-up of the medical consulting rooms, but also to the delivery of information. The way
in which information would flow between doctors and patients was socially determined
according to a variety of roles: patient, doctor and non-medical health providers. In this
sense, disclosure or concealment, at the appropriate time and in the appropriate way,
further defined the professional status of the doctor in relation to all these others. Blum
said as much in the words above. The diagnostic label demonstrated the doctor’s exper-
tise and just as importantly his power.
It is somewhat paradoxical that the same argument linking diagnostic disclosure to
power was assigned to the quack some 50 years prior. Recall that Saundby (1907)
described diagnostic naming as a ‘trick of the quack’ and disparagingly lamented how
the quack used the labelling of the disease to place the patient ‘more completely in his
power’ (p. 105).
While doctors were concerned about quacks exercising power upon the patients and
their families via diagnosis, they did not necessarily consider their own exercise of
power. Cabot was one prominent counter-example. He maintained that telling a patient
their diagnosis played an important role in the medical consultation. He used diagnosis
to confirm his authority in relation to unqualified practitioners and to the lay person. At
the time, he wrote, the differences between professional and lay understandings of diag-
nosis was widening as diagnostic technologies developed and the emphasis on diagnosis
in private practice developed. But diagnosis was, in his view, the linchpin to medical
authority. Clear and correctly arrived upon diagnoses would reduce the commercial pro-
motion of therapeutics by unqualified practitioners. Cabot argued vehemently, however,
that patients were capable of, and should be entitled to, the name of their disease. He
engaged in frank written, and one presumes, verbal debates with his patients about what
ailed them (Crenner, 2005).2
But finally, we cannot overlook the authority which results from, as underlined by the
words of Hippocrates in the introduction, the ability to ‘say what is going to happen’.
Any discussion of diagnostic disclosure must acknowledge the presumed link to progno-
sis that a particular diagnosis can suggest. Implied in almost every mention of diagnostic
disclosure is the idea that the diagnosis is conferring what Glaser and Strauss (1968)
referred to as ‘an awareness of dying’. Indeed, death is a likely the outcome of many of
the diagnoses which have been the focus of the writings to which I have made
reference.
To say to a patient ‘you have [any disease]’ is not to say that death is imminent, and
diagnosis is often connected with uncertainty as to its outcome (see Henderson above:
How will the patient respond? How will the disease respond? What treatments will be
possible?). While many of these authors are reluctant to venture into prognosis on the
basis of the diagnosis proffered, by mentioning the diagnosis, a number of undesirable
outcomes become manifest, and mandate that the doctor either ‘conceal … the danger of
death’ (Cathell, 1885: 107) or alternatively ‘… discharge his duty, painful and heart-
rending though it be’ (Mütter, 1851: 12).
12 Health 00(0)

Today
I opened this article suggesting that history had an important contribution to make to our
understanding of contemporary practice. Not only does history give us an opportunity to,
as Zerubavel asserts, look for patterns across eras, media and contexts but it also offers us
a critical distance. Emily Martin (1992) has pointed out just how difficult it is to see the
cultural content of contemporary practices. History, she has said, provides us with some
critical distance from which to consider practices like, in this case, the naming of disease.
Historical evidence gives us a sense of social patterns, of practices or values that resur-
face or alternatively never went under (Zerubavel, 2007). Here, we can see many ways in
which the historical practices around diagnostic revelation transcend their historical con-
text and continue to resonate in contemporary practice. However, this particular analytic
approach is intentionally blind to the idiosyncratic. I have not attempted to make critical
distinctions between this group and that, this context and that, as I am looking to develop
higher level analysis in line with the principles of Zerubavel’s social patterns.
As Brehkhus (2000) explains, ‘investigations of social life often begin with that which
is already visible and named’ (p. 89). Social scientists are fascinated by that which is
marked as unique and distinct, rather than the backdrop of the ordinary. He maintains
that sociologists end up creating stereotypes on the basis of their fascination with divi-
sions, identity and difference. This is a tack also taken by Degloma (2014), who main-
tains that ‘deliberately down playing differences’ reveals explanatory patterns (p. 5). A
non-Zerubavelian sociologist might find this work cavalier, as one makes generalisations
on the basis of data coming from different eras, specialisations and settings. Indeed, I
would likely arrive upon different conclusions if I were to specifically narrow my gaze
to a particular sub-specialisation of medicine, or a particular national configuration.
However, richly textured such information could provide about the idiosyncrasies of
particular cases, such thick description would be gained at the expense of generalisable
patterns.
In my 2016 paper, I focussed on one of these configurations, looking at how French
beliefs in relation to divulging the cancer diagnosis had stayed the same, despite the
appearance of change conveyed in a state-mandated alteration in practice. This French
example adds structure to the pattern I report in this article. Like the historical examples
provided herewith from the material available to English-speaking physicians, French
medical writings punctuate the transformative power of diagnosis and its damaging
potential to the individual and provide a means for ‘analogous’ theorising which is piv-
otal to social patterns (Zerubavel, 2007: 137).
The focus on diagnostic disclosure alone – as opposed to what categories of physician
are making the commentary, the era in which the disclosure is taking place, the context
from which the physician is practicing or even the original language of the publication in
which the comments are written – is a methodological virtue rather than a liability in the
Zerubavelian approach (p. 140). The focus is thematic, singular and abstracted. This
approach is not without limitations, and specific questions about variations in beliefs
among physician groups or across national or historical contexts are indeed worthy of
study. However, they are more meaningful and have more import as they are answered in
relation to the social patterns identified in this article.
Jutel 13

What these findings to enable already is a reflection about the persistence of the val-
ues in today’s approaches to diagnosis and its revelation. There are many contemporary
demonstrations of the points highlighted by this historical material. Diagnosis today con-
tinues to confirm medical authority as it did in Hippocratic times, and in the historical
material reviewed above. Not only does the pursuit of the diagnosis construct the patient–
doctor relationship but it still differentiates doctor from other health professionals, and
professional from lay. Diagnosis still serves as a way of deflecting threats to medical
authority.
While the threats to modern medicine are not identical to those in the 19th century,
neither are they totally different. Even while ‘Dr Google’ (on-line sources of diagnostic
information of sometimes dubious quality) appears to be a new player in the game,
Lapham commented on a vintage version in 1937, when he wrote that patient complaints
‘… follow the fashions as set by the news of the day or of the community. If they hear a
talk or read something on cancer, that is their phobia for the time being’ (p. 3). The bot-
tom line, today, as in 1937 is that still it is the doctor who has the authority to finish by
naming the diagnosis. Smart phone and tablet self-diagnostic apps offer means for diag-
nosing, as do online check lists, but even such tools relinquish any responsibility for
actual diagnosis (Lupton and Jutel, 2015). They can qualify as ‘aids’ or ‘teaching tools’
or even ‘entertainment’, but ultimately the responsibility for diagnosis is vested in
medicine.
A number of professions (nurse practitioner and physiotherapist) make forays into
diagnosis, and while these diagnosticians are not put into the same category as the last-
century ‘quack’, their diagnostic incursions are first debated, and then authorised by the
medical profession. In many states and provinces, where diagnosis can be performed by
other professions than medicine, it is only allowed as a delegation in a medically super-
vised settings. The entry into practice and the diagnostic scope of non-doctor diagnosti-
cians is limited: approved and monitored by the medical profession.
However, the esoteric nature of diagnosis remains enticing and being able to think
‘like a doctor’ is a valued attribute. It is the title of a popular New York Times column
which challenges lay people to name peculiar presentations of disease. Similarly, it fea-
tures highly in popular culture through TV shows (ex: House, MD; Breaking Bad,
Madmen); movies (ex: Still Alice, Wit, 50/50) and novels (ex: Saturday, Blazing World,
Gilead) (Jutel and Jutel, 2017; Jutel, 2016).
This article underlines how diagnosis makes a profession. Few doctors would dispute
this fact today. The professional still differentiates herself from the lay person by virtue
of diagnosis; the pursuit of the diagnosis is usually what leads a patient to consult in the
first place. Diagnosis still embodies ‘truth’ via its commitment to science and to an ‘evi-
dence base.’ It continues to differentiate the doctor from the ‘non-scientific practitioner’,
or from other practitioners (non-scientific, nursing, osteopathic and so forth); and while
the doctor may no longer be the gate-keeper to heaven, in our time, she or he is still the
one who provides a prognosis, or best guess, about the future.
Understanding the degree to which diagnosis provides a social need, and creates
social consequences, for patient and doctor alike, helps explain medicine’s concern with
diagnostic disclosure and its modalities. Particularly when the outcome of the diagnosis
is beyond the diagnoser’s control, as is often the case with the ‘dire’ diagnosis, the focus
14 Health 00(0)

may shift from the disease process to the means by which the diagnosis is delivered.
Putting a name to a disease remains transformative for the individual who receives a
substantial diagnosis. Naming it emerges from, and contributes to, the authority of the
medical profession in its historical traditions and in contemporary society.

Acknowledgements
The author would like to thank, in particular, the librarians at Victoria University, the Center for
the History of Medicine at the Countway Library (Harvard University), and at the Wellcome
Library (London). For their support during the research process, the author thanks Justin Cargill at
the Victoria University of Wellington Library, and the librarians at the Countway Library
(Harvard), the University of Otago Medical Rare Books collection and the Wellcome Collection.
For their helpful comments during the preparation of this manuscript, the author would like to
thank Douglas Booth, Barbara Brooks, Sue Wootton, Anna Jackson and members of the Critical
Diagnosis Network at Victoria University of Wellington.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship,
and/or publication of this article.

Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/
or publication of this article: This work was supported by the University Research Fund of Victoria
University of Wellington.

ORCID iD
Annemarie Jutel https://orcid.org/0000-0001-7131-3838

Notes
1. Okham’s Razor is the adage that nothing should be sub-divided more than is strictly necessary.
2. However, as Crenner reveals, Cabot ironically argued firmly against his own wife being told
of her terminal diagnosis.

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Author biography
Annemarie Jutel is Professor of Health at Victoria University of Wellington (NZ). Her multidisci-
plinary work focusses diagnosis from critical humanities, sociological and clinical perspectives.
She is the author of Putting a Name to It: Diagnosis in Contemporary Society (JHUP).