Medicine and the Politics of Knowledge - Chapter 1

Ethnography from southern Africa

Fritha Langerman. System of human knowledge: Reason. Linocut from the exhibition, The Knowledge

Chambers (2007), and reproduced with permission of the artist.

Ethnography from southern Africa

Fritha Langerman. System of human knowledge: Reason. 2007. Linocut.

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The unequal distribution of health-damaging experiences is not in any sense a ‘natural’ phenomenon

but is a result of a toxic combination of poor social policies and programmes, unfair economic

arrangements, and bad politics.

Commission on Social Determinants of Health (CSDH) (2008)

Image from the exhibition Subtle Thresholds, reproduced with permission of the artist, Fritha Langerman.

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15

1

The rings around Jonathan’s eyes: HIV and AIDS medicine at the

margins of administration

Oliver Human

Since the end of Apartheid, the South African state has had to learn to deal with

the need for the equitable allocation of resources to the entire population. In the

conception of the modern nation-state adopted by the South African government,

part of what it means to be modern is based on a belief that by effectively

modelling the scenarios a state practitioner may face, the state can effectively

deal with any problem found within the population that it is governing. The

management of resources depends, in this conception, on the ability of the state

to audit and measure the performance of state actors to make sure that limited

resources are used as efficiently as possible. One way to ensure this distribution

of resources in the realm of health and medical care is through standardising

services, which is made possible by protocols based on a cognitivist view of

medical practice. In this chapter, I illustrate how doctors deal with a medical

protocol when practicing medicine in a particular context. By describing how the

act of diagnosis is based on contingent, material factors rather than universal sets

of syllogisms, I illustrate the limits of the cognitivist model upon which protocols

are based. At the same time, I explore the ethical implications of following a strict

model of standardisation, as occurs through a strict reading of protocols.

I explore the operation of a medical protocol within the daily workings of a

clinic, and illustrate how a protocol, designed to serve a population both present and

future, grates against an ‘exceptional’ patient in the present and his or her particular

future. I illustrate both the impossibility of a completely successful protocol and

the impossibility of success in fighting a disease, under present conditions, without

protocols. Especially in exceptional cases, in order to diagnose disease effectively,

a doctor must often break with protocol and concede to the risk inherent in this

This chapter first appeared in Medical Anthropology: Cross-Cultural Studies in Health and

Illness 30(2): 222–240. The original paper was produced for the Sawyer Seminar Series on

Knowledge and the Body held at the University of Cape Town in 2009.

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16 Medicine and the politics of knowledge

divergence from authority. By relying on traces of evidence not modelled, and by

diverging from protocols, doctors depend on a type of knowledge, an ‘excess’ to that

which is considered central to thought processes. This challenges modernist ideals

of classification, upon which much of the dream of the modern state depends. Yet,

paradoxically, the modern state’s success rests precisely on knowledge of excess of

this sort.

To demonstrate this, I focus on two doctors, Dr Gous and Dr Mira

(pseudonyms). Dr Gous is the regional manager of rural HIV clinics in an

agricultural region of South Africa. The clinics which he runs and in which he

works are unusually well staffed and orderly for rural public clinics, the result of his

management skill and successful applications for outside funding that allow him

to retain extra staff. His hard work is driven by faith in the equality of all humans

and the right of all to decent living conditions. Resources are used creatively in his

clinics, and his approach is expressed in a pragmatic attitude toward medicine: any

problem can be solved, any practice improved.

Dr Mira was born and trained in Europe in an environment of high

healthcare standards. She has a background in medical research, in pathology

in particular, and is confident of her diagnostic ability. Her experience of South

Africa is that opportunistic infections such as tuberculosis (tb) in HIV-positive

patients often are misdiagnosed, and she gets frustrated by what she sees as

unnecessary deaths. In her view, deaths should only be the result of incurable

disease, not bad management or incorrect diagnoses. The contrast between

the clinics in which Dr Gous and Dr Mira work is immense. Dr Mira’s clinic is

literally and figuratively on the margins of the city of Cape Town. From the clinic

one can see both the countryside and the abject poverty in which people live on

the economic and social fringes of a major urban centre. As Dr Mira points out,

this is a forgotten place. The clinic is understaffed and, until recently, she was

the only qualified doctor working in HIV and AIDS in the clinic. Long queues

of patients from the surrounding townships wait outside her door for their

appointment with her.

While I was sitting in on a consultation one day, a healthy looking patient

walked in. With great enthusiasm, Dr Mira drew my attention to the patient,

‘Jonathan’, stating that just four months previously he was on his deathbed.

Jonathan had come into the clinic, thin and wasted, assisted by the nurse because

he did not have the strength to carry himself. Before even shaking his hand,

Dr Mira says she could see that he had tb; after examining him, she diagnosed

tb. However, Jonathan stated that he had been turned away from the clinic twice;

the doctors could not diagnose tb because he could not produce sputum for a

microbiological test. A microbiological test is an administrative requirement for

diagnosing tb, and is one of the key requirements of the tb protocol for diagnosis.

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hiV and aids Medicine at the Margins of adMinistration 17

Often, however, as was the case with Jonathan, the only symptom is diarrhoea,

and consequently such patients are diagnosed as suffering from gastroenteritis.

This is due to the critical state of the disease in the patient’s body; and the time

spent misdiagnosing patients costs them their lives. As a doctor working with AIDS

patients, Dr Mira knew that somebody in Jonathan’s condition would not be able

to produce sputum due to the workings of HIV on the immune system. Dr Mira

subsequently sent Jonathan to a local hospital. It took the hospital two weeks of

testing before they began Jonathan on tb medication on empirical grounds – they

started with the medication just to see if he would improve. Two weeks later, when

Dr Mira visited the hospital, Jonathan’s condition had improved considerably. Yet

Dr Mira’s initial and correct diagnosis had been applied by the hospital only as a

last resort. Her position in the clinic and her experience in HIV medicine enabled

her to defy the protocol with which the tb doctors were complying in order to save

Jonathan’s life. Other doctors lacked this insight.

The protocol and the logic of the machine

Protocols are important for standardisation, since they attempt to structure practice.

As Berg, quoting Eddy (1990), states:

Protocols are ‘performed recommendations issued for the purpose of

influencing decisions about health interventions.’ By analyzing ‘decisions

before the fact’, they prevent the ‘mental paralysis and chaos’ that would

otherwise result from having to rationally decide every time again from

scratch … Through the branching structure of the protocol, a clinician can

now, at long last, specify the flow of logic in his reasoning, [so that he] can

begin to achieve the reproducibility and standardization required for science.

(Berg 1998: 227)

By attempting to standardise decision-making, protocols introduce into medical

practice a normative framework by which one can measure the performance of

a doctor (Berg 1995). A protocol structures, ‘rationalises’ and prioritises certain

ways of thinking above others and aims to make thought processes efficient.

Efficiency is created by the belief that individuals can belong to particular

categories or population groups, and doctors simply need to place individuals

into the correct group for a correct diagnosis. Thus, the doctor’s performance

can be measured by how accurately he or she applies the protocol. In this regard,

protocols serve a valuable function; they assist in treating major diseases in the

greatest number of people by focusing on problems of health for a population.

However, due to the administrative structure that protocols make possible and

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the monotony of routine, protocols exclude the possibility of exceptional cases.

The critique of protocols derives in part from these exceptional cases. So, in order

for medicine to reach the greatest number of people, major health organisations,

such as the World Health Organisation (WHo), establish protocols that exclude

the work of exceptional cases, because, by definition, these are not cases that can

be easily classified into pre-existing populations. This results in the situation

where exceptional patients require expertise and effort to maintain their health,

thereby requiring expenditure on resources that could be used more efficiently in

non-exceptional cases.

Berg (1995) argues that before World War II, medical practice was not

described by the editorials of leading North American medical journals as a

scientific practice or endeavour to the same extent it is today. Rather, these

editorials described medical practice as the artful application of scientific

knowledge and, as such, held in high regard the ‘intuitive’ nature of the

physician’s practice and decision-making process. These editorials argued that

‘medical practice should never let this science impinge too closely – lest the

artful ability to apply this science be lost’ (Berg 1995: 442/3). Berg illustrates

how medicine came to be conceptualised differently after World War II; and

this has affected how the problems of medicine are defined. Medicine began to

be associated increasingly with the ‘hard sciences’, implying that increasingly

it was distanced from a practice in a particular context. This was an attempt to

standardise and universalise medicine for the sake of administrative orders,

such as the state, which aim to provide healthcare for a population. The result

of this re-conceptualisation was that the problems associated with medical

practice shifted from the environment within which a physician practised to

how the physician practised. In other words, how medicine is conceptualised, for

example, as a science or not, affects how medicine’s problems are conceptualised,

and whether limitations are found in the physician’s mind or in his or her

environment. In the conceptualisation of ‘medicine as an art’, the problems

defined were largely limited by socio-economic constraints placed on a doctor’s

practice. As the re-conceptualisation of medical care takes place, one can witness

diminishing concern for the socio-economic conditions under which a doctor

practises and increasing focus on a doctor’s decision-making ability. Therefore:

Contrary to early postwar views, many recent conceptualizations of medical

practice locate both its scientific character and the causes of its problems

in the physician’s mind. This cognitivist discourse on scientific medical

practice … draws upon both the prevalent, positivist rhetoric and the notion of

the individual, autonomous physician – a notion which has remained crucial

to the profession throughout the postwar era.

(Berg 1995: 439, emphasis in original)

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In its description as a cognitive – scientific enterprise, the practice of medicine

has thus been estranged from the practical, contingent reality of life. This

(re)description of medicine allows various factors to come into play within medicine

that do not necessarily serve the interests of good medical practice. For instance,

in describing

medical practice itself as a ‘scientific’ activity … a general explicitly normative

framework is introduced, with which this practice can now be scrutinized

and judged. It is a yardstick to measure (and find lacking) the actualization

of the ‘science.’ When ‘scientific medical practice’ means merely the

usage of scientific knowledge, one can scrutinize medical practice for

places where this knowledge is improperly used, or not used at all.

Standardization is then a way to guarantee optimal flow of information so

that the benefits of science reach those who need it.

(Berg 1995: 459–460, emphasis in original)

The normative framework introduced is now a means by which a physician’s

practice can be judged. Subsequently, the possibility of auditing is introduced into

medical practice. The state thus gains control over its practitioners, legitimised by

modernist ideals of creating a health system that is accountable to its population.

This ideal of a normative framework could also be seen to support the

propagation of evidence-based medicine, through which doctors are ‘being

conditioned to function like a well-programmed computer that operates within

a strict binary framework’ (Horton 2007: 2). The use of analogies surrounding

thought processes and computers is of special interest here. The result of the

re-description of medicine discussed previously was that medicine could now be

viewed as a scientific practice and the improvement of medical care could be placed

within the decision-making realm of doctors. Thus the problems of medicine

shifted from material concerns within the environment of the doctor to his or her

attempts to make rational, scientifically based decisions. This decision-making

process has now been ‘perfected’ by evidence-based medicine’s cognitivist approach

in order to improve the accuracy of the statistical thinking around ‘what physicians

do’ (Berg 1995: 461). However,

these are not newly found solutions for pre-existing problems. With cognitive

psychology, ‘the Mind came in on the back of the Machine.’ Human

judgment was described, judged and explained with models derived from

images of the scientific process and computers, and statistical decision

analytic techniques. In the same vein, these models will now overcome

the faults of medical practice. The point is to see that the tools which are

described as solutions lay at the root of the reconstruction of the problems

in the first place … The ‘solutions’ are the tools which shaped the cognitive

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perspective of medical practice. With the construction of the solutions, the

specific shapes of the problems were co-produced.

(Berg 1995: 463, emphasis in original)

Therefore, via Berg, we can view how evidence-based medicine is the result not

only of a particular discourse surrounding medicine, but also of advancements in

technologies that shape what are considered problems and what are not.

In aiming to anchor decisions and structure practice, protocols illustrate a

particular, idealistic view of medicine. This is medicine in a perfect world, where

logic and universal circumstance determine the outcome of any experiment:

With its invariable replicability and law-like precision, this view of science

is a matter of simple logic with readily deduced details and rule-governed

consequences. What characterises the care of patients, however, is contingency. It

requires practical reasoning or phronesis, which Aristotle described as the flexible,

interpretive capacity that enables moral reasoners … to determine the best action

to take when knowledge depends on circumstance.

(Montgomery 2006: 4–5, emphasis in original)

Phronesis is knowledge gained through practical experience in a contingent world; it

depends on, and is expressed through, practice. ‘Its essential virtue is … that [it] enables

physicians to fit their knowledge and experience to the circumstances of each patient’

(Montgomery 2006: 33). It is a general body of knowledge in combination with the

particular idiosyncrasies of the individual practitioner and his or her experiences with

different medications, diseases and patients that may divert from orthodoxy.

Hubert Dreyfus has written extensively on the models used by cognitivists in

order to explain the decision-making techniques of experts (Dreyfus 1999; Dreyfus

& Dreyfus 1986, 2002). According to Dreyfus, the history of Western thought, since

Socrates, has defined expert decision-making as a process of following rules or sets

of syllogisms. Dreyfus argues that since the invention of the telephone switchboard,

the human mind has been conceptualised as operating like a machine, with

the model of the brain changing as our technology develops from the telephone

switchboard to the modern digital computer. This, combined with the inherent

rationalism of Western philosophy, has given rise to cognitivism:

Cognitivism is rationalism turned into a research program. It proposes

to use the computer to show how, on the rationalist account, the mind

actually works … At this level, both the human brain and the appropriately

programmed computer can be seen as two different instantiations of a

single species of device – one which generates intelligent behaviour by

manipulating symbols according to formal rules.

(Dreyfus & Dreyfus 2002: 2)

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However, the notion of phronesis provides us with a different model of human

cognition. This is a model that is based within a world of action and practice, a

‘knowing how rather than a knowing that’ (Dreyfus & Dreyfus 1986: 4, emphasis

in original).

An example from the field illustrates this point nicely. On my very first

day with Dr Gous, I saw him interact with Louise (pseudonym). When he greeted

Louise, he asked her about the voices she was hearing. Her reply was that this

was fine. On examining her medical record, Dr Gous seemed very pleased by her

adherence rate to her HIV medication and her general well-being. It was a short

consultation, as they often are with patients doing well with their medication.

Afterwards, Dr Gous explained to me that Louise had been diagnosed as suffering

from schizophrenia, and was being treated for this as well as for HIV. Louise had

been one of the first patients Dr Gous had put onto antiretrovirals (ARVs) once they

began to be provided for free by the state. (Prior to this he had provided ARVs to

eligible patients with help from foreign donors.) According to psychosocial criteria

provided by the WHo, which guide doctors as to who would potentially be adherent

with ARVs, Louise was not a likely candidate. Not only was she diagnosed with

schizophrenia but, due to her mental illness, was cast out by her family, and lived

alone, without any financial or emotional support. Her mental illness, her solitary

existence, and her lack of income all indicated that Louise would be very unlikely to

maintain a healthy adherence rate. However, Dr Gous’s experience with this patient

and others like her, his phronesis, led him to take the risk of giving Louise ARVs.

His decision so far has been vindicated: Louise, at the time of the consultation,

had maintained an adherence rate of between 95 per cent and 100 per cent. That is

anything between 142 and 150 pills a month, two in the morning and three 12 hours

later, every day, at the same time. When I asked Dr Gous how he ‘knew’ that Louise

would be adherent, he said he could not say but that he merely got the impression

that she would be successful during his brief interactions with her and from his

previous experiences with the people who frequented his clinic. Dr Gous could not

formulate a syllogism, could not tell me that Louise would be successful because of

a set of factors that he identified. Rather, he had made the decision grounded in an

everyday, practical contingent reality, unable to be defined in the abstract.

Phronesis describes action related to contingency and the ability to adapt

universal rules to particular circumstance. This can be viewed as the ‘art’ of

medicine, in that the outcomes of the medical decision-making process cannot be

traced to a rational decision-making trail, but rather occur in the spaces, excesses

or differences that exist in between the factors considered key to decision-making,

as defined by models such as protocols or evidence-based medicine. Doctors make

decisions rather than calculations; the proponents of a strict standardisation and

cognitivism would like us to follow, instead, calculation according to protocol. As

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Jacques Derrida (2002) notes, a decision must have an element of incalculability

within it. A decision is always a risk – a space must be crossed that cannot be

explained or rationalised:

If one were sure of the calculation, it would not be an action or a decision;

it would be a programming … There is no decision without the undecidable.

If there are no undecidables, there is no decision. There is simply

programming, calculation. There must be political, ethical decisions, but

these decisions are possible only in situations where the undecidable is a

necessary dilemma. Thus a certain undecidability … is the condition or the

opening of a space for an ethical or political decision.

(Derrida 2002: 31)

Any decision a doctor makes concerning the life of a patient covers a gap filled

with both politics and ethics, concerning, for example, the life of an individual

versus the life of a population. It is an ethico-political decision regarding the

patient’s life, the doctors’ place within a hierarchy, broader questions concerning

the common trajectory of the disease, resistance to drugs, and the responsibility

of medicine and the patient toward the health of the population as a whole. In

making a decision, responsibility arises due to the fact that a risk was taken; a

calculation was not made in which failure could be attributed to a ‘system’; rather,

responsibility for crossing a gap is placed on the shoulders of the decision-maker.

This gap is created by the contingency that a doctor experiences when dealing

with a particular patient in a particular context. As contingency, by definition,

can never be modelled, the protocols we use in clinical settings will always be

limited and doctors will always be faced with such a gap. One can note, then, how

a protocol aims to anchor these decision moments, making them not moments

of decision but moments of calculation; but, inevitably, these are moments of

decision unless one follows the protocol in which responsibility (or ethics and

politics) is shelved on to a system of governance. In the language of cognitivism

and the standardisation it attempts to make possible, one can see neglect in the

ethics of following rules or protocols. Under the cognitivist paradigm, if we follow

the system, we will never make mistakes. However, if we follow alternative models

of how the mind works, Dreyfus’s being just one, we begin to see the difficulty of

a comprehensive standardisation of medicine.

The excess of categories

As with all systems of governance, protocols and the standardisation that results

from them depend on categorising patients into particular groups. Patients are

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classified according to sets of symptoms; for example, a person with tb must have

microbiological proof of bacilli infection or must experience night-sweats and

weight loss. The reproducibility and standardisation made possible by protocols,

resulting in the categorisation of individuals, allows one to create groups through

numbers; in other words, it aids the creation of statistics that express a particular

concern for a population. Ian Harper (2005) describes how such a concern for

statistics has created the concept of ‘statistico-tuberculosis’, which is

intimately concerned with a global (and national) prevalence of the disease,

which, it is believed, will decrease when enough infective patients are found

and effectively treated … For the tuberculosis reified as a population problem,

‘statistico-tuberculosis,’ is the one that has the spectre of multi-drug

resistance hanging over it.

(Harper 2005: 136)

In this light, there is more concern with the control of an epidemic in a population

than with the care of an individual. One can easily extend the idea of statistico-

tuberculosis to that of statistico-HIV or even statistico-HIV/tuberculosis XDR

(a drug-resistant form of tb). The reification of disease into a threat (real or

imagined) faced by a population, therefore, attempts to justify the treatment of a

population above an individual, for the sake of the future, forsaking the individual

present. However, such reification into statistical threat is what makes activism on a

global scale possible. Roughly two-thirds of the world’s HIV-positive population, who

live in sub-Saharan Africa, or the five million HIV-positive people living in South

Africa, are products of a standardised system relying on protocols. The difficulty for

nurses and doctors is in treating patients as individuals, while reifying their disease

as a global threat (Van der Walt & Swartz 1999).

For Jonathan and Louise, the demands of the protocols did not take

precedence over their lives. The lack of microbiological proof of infection did

not concern Dr Mira; Louise’s psychiatric diagnosis did not take precedence for

Dr Gous. Microbiological proof is an administrative requirement for diagnosing

tb and would allow the administrative agent to classify Jonathan as a tb patient.

Yet, due to his HIV-positive status, Jonathan was not able to produce sputum and

thus could not fulfil the administrative requirements for this particular risk group.

Nevertheless, Dr Mira diagnosed tb in Jonathan by looking at his body. She noted

that he was HIV-positive, was rapidly losing weight, and was having night sweats

despite not coughing up sputum. She took Jonathan as an individual, and despite

beginning her diagnosis at the same place as had the tb doctors, that is, by using

statistical data that delimit a range of risk values (such as being HIV-positive and

so susceptible to tb bacilli), she ended in a radically different place. This is not

an argument against models: the thought processes of doctors such as Dr Mira

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or Dr Gous do depend on models. However, the standardisation of models that

protocols demand differs from those used by these doctors. As Jonathan’s case

illustrates, the resources for testing and curing his tb were available (as was the

eventual case), but the protocols on which the tb doctors relied structured their

thought in a way that led them to misdiagnose. The models that doctors such as

Dr Gous and Dr Mira use are much ‘looser’ than the rationalised and standardised

models demanded by administrative orders.

Here we can extend Mosse’s (2004) notion of an ‘interpretive community’ to

the realm of diagnosis. A protocol depends on an ‘interpretive community’, which

ascribes symptoms to diseases, a community such as a group of ‘experts’ within the

WHo, for instance. A doctor like Dr Mira takes the risk of running up against the

medical orthodoxy of these interpretative communities, whereas a doctor operating

under the protocol’s framework can ‘play it safe’ even at the risk of somebody’s

life. Symptoms are ‘evidence’ of disease, but of which disease is a matter of the

discretion of the physician in charge; it is a matter of ‘chance’ whether the physician

will diagnose correctly.1 The symptoms ascribed to disease by an administrative

network limit these chances, and the success of these protocols depends on not

being proven incorrect by an alternative diagnosis. Methods do not order the world,

but rely on evidence to the contrary to slip through unnoticed, such as tb patients

who die because their symptoms could be ascribed to other causes. Joao Biehl

(2004) coined the term ‘technologies of invisibility’ for this process, whereby certain

patients ‘slip through the cracks’ of the health system. Bureaucracy depends then on

complexity and messiness, not order.

The attempt to hide messiness also relies on doctors’ compliance with the

sets of rules laid out by the prevailing order. Strict exponents of protocols assume

that doctors all operate under the same ethic and toward the same ends, without

problematising what this ethic or these ends may be. The social or material

circumstances under which doctors operate imply that much more than clinical

decisions play a role in determining the outcome of an interaction with a

patient. In approaching a patient, a doctor needs a way in which he or she can

view or analyse the patient, a means by which to frame his or her patients. The

framing process essentially amounts to limiting options or solutions. Protocols

and evidence-based medicine attempt to create such frames. These approaches

assume that frames exist independently of the material conditions under which a

doctor finds himself or herself. In contrast, Dodier (1998: 53) argues ‘that a person

adjusts to a situation not by using discrete resources, but through arrangements of

resources (words, rules, objects) in which past experiences are inscribed, that is,

through frames’. The arrangement that people find themselves labouring under,

therefore, has past experiences, present necessities, possibilities and limitations, as

well as future expectations, inscribed into the use of resources. Multiple approaches

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and resources, and limitations, are available in any situation, and more than one

frame is available for each encounter experienced by a doctor. An active as much as

a passive choice shapes which frame will be applied to the situation at hand (Dodier

1998). Each frame, thus, relies on different points of reference according to a desired

outcome (Harper 2005), which is dependent upon a particular ethic, and the

availability of resources, both ontological and epistemological. A given frame can

conflict with, mix with or succeed another frame in a particular circumstance.

Administrative orders such as those of the state, through the propagation

of protocols, attempt to develop frames, such as evidence-based medicine, which

aim to place individual patients into formal categories according to references to

a population, consistent with categories of risk established by a central authority.

Dodier has labelled this type of framing the ‘administrative frame’:

The administrative frame depends on rules coming from the centre, as in

other bureaucratic situations, and it is the administrative frame that has

developed massively under the combined influence of scientific networks

and those of the law … Dodier also highlights that this corresponds to the

diffusion of protocols deeply into the system.

(Harper 2005: 132)

In contrast to the administrative frame, the type of frame I am discussing here is

hard to classify, because it depends on an apparent absence of framework as the

decision-making process is not limited to a set of syllogisms. This does not mean

that a framework does not exist. Rather, one cannot model the frame in the same

way that evidence-based medicine hopes to. The doctor may apply the rules and

syllogisms granted by administrative frameworks, but, at the same time, may not

feel obliged to comply with these rules or need to reduce his or her decisions to

some set of laws. Such doctors operate in a field open to risk and error, if measured

by the framework of the administrative order.

However, the risk that a doctor takes is not limited to patients who are

classified as marginal to an administrative order. As an example, Janie is a middle-

aged man who is married, has three children and works as a policeman. He is a

bit overweight. The stresses of being a policeman in a violent country have taken

their toll on his well-being. The psychosocial criteria for ARV-eligibility state that

employment and stable family lives are good indicators for positive adherence rates,

yet Janie has defaulted once before from his medication, and currently has a poor

adherence rate. In contrast, Louise (mentioned above) is single, unemployed, lives

alone and has schizophrenia, yet she has been highly successful on ARVs. The same

doctor (Dr Gous) examined these two patients and decided to place both on ARVs,

with Janie, who complies perfectly with the criteria, defaulting from the medication,

and Louise, ordinarily seen to be unsuitable, successful. Therefore, the risk that

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Dr Gous took when he placed both patients on ARVs was not one acknowledged

by protocols but one that Dr Gous, in his experience with both patients,

determined himself.

Operating under an administrative frame requires outside support. Some

order or power must create, allow and impose categories and classes onto a complex

world. This support comes from a history of Western rationalism, the hegemonic

force of the methodology of science, and the state’s dependence on this method

for governance over the distribution of medicine. These phenomena are guided

by a belief in the benefits offered by modernist ideals of control over a complex

world. As discussed, the nature of a diagnosis can depend as much on intuition,

on traces found in the excess of models, as on ‘methodological’ evidence.2 For

example, in the case of HIV-positive patients, especially in the more critical stages,

with CD4 counts of between 20 and 100 (as in the case of Jonathan), often the only

symptom revealing tb would be diarrhoea. A doctor such as Dr Mira, relying on

her experience and intuition, would diagnose tb and would often be proven correct

once tb medication had begun. However, a doctor guided strictly by protocol would

diagnose gastroenteritis, as he or she could not ‘find’ any symptoms that would

reveal otherwise, yet would be confident in the decision because of the institutional

support received. Due to the critical state of many patients, the time wasted trying

to treat gastroenteritis often costs them their lives. These patients will then be said

to have died of AIDS-related complications rather than tb.

In this case study, the lack of microbiological proof of infection did not

concern Dr Mira and, although she could not fulfil the administrative requirements

for this particular risk group, she diagnosed Jonathan correctly. In an interview

after meeting Jonathan, Dr Mira stated that she could see he had tb the moment

he walked into the room, and diagnosed this by the ‘colour of his skin or the rings

around his eyes’. When interviewed, Dr Mira stated that she believed that

doctors have gut feeling. I know how these people look like. I know

the colour of the skin. I know everything which you can’t even write in

words … [You’re a photographer?] … Yes, that’s it, and my interior designer

said: you have a discerning eye, and I do. I do, I’m telling you, there are tb

symptoms that I can’t put on a list, which is in the way they walk into the

room, the way they look at you, the way they … without even loss of weight,

that kind of chronic infection look, which seems to make these kind of very

round circles on the patient not easy to see.

(Interview, April 2008)

Dr Mira reveals something about diagnosis that cannot be expressed verbally,

cannot be put on a list or modelled, but is rather revealed in the excess of the

model, at the margins of what is considered central to medicine. Her experience as

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a photographer, as well as her experience practicing medicine, grants her access to

shades of skin tone unnoticeable to the inexperienced eye, the life experiences of

the doctor both ‘inside’ and ‘outside’ of medicine contributing toward a diagnosis.

What is important is not that she lists symptoms, but that she reveals to us the

impossibility of comprehensive lists and models. Dr Mira moves from the colour of

skin, to interior design, the way tb patients walk and the look in their eyes. Yet she

states, ‘I know everything which you can’t even write in words.’

The assumption made by proponents of a strict standardisation or evidence-

based medicine is that knowledge is disembodied and, therefore, can be modelled

into a universal protocol:

Adherents of the psychological and epistemological assumptions that human

behaviour must be formalizable in terms of a heuristic program for a digital

computer are forced to develop a theory of intelligent behaviour which makes

no appeal to the fact that a man has a body, since at this stage at least the

computer clearly hasn’t one. In thinking that the body can be dispensed

with, these thinkers again follow the tradition, which from Plato to Descartes

has thought of the body as getting in the way of intelligence and reason,

rather than being in any way indispensable for it.

(Dreyfus 1999: 235)

With disregard for the material circumstances under which a doctor practised,

the human body became a hindrance to accurate decision-making. However, the

embodied nature of diagnosis is revealed in interviewing Dr Mira, who, while

discussing her diagnosis of tb in Jonathan, touches her face around her eyes and

says she sees something in the eyes of tb patients. She cannot describe this, but it is

revealed to us, the interviewers, in her body language. The store of knowledge she

is recollecting here is not an epistemological store in her mind, a list of symptoms

she recalls. Rather, this knowledge is embodied in moments and contexts; it is

revealed by means of body language assisted by words. So an apparent ‘run-of-

the-mill’ patient on paper could have radically different problems, detected by the

physician with a touch or an answer to a question, which can only be realised in the

physical encounter between an experienced doctor and patient. There is then an act

of diagnosis, a material manifestation of symptoms invisible to the untrained eye

yet essential to what is traditionally considered thought processes. As Montgomery

(2006: 34) argues:

even if computer programs, like textbook descriptions or the protocols given

to emergency medical technicians, worked most of the time, they would

still be an inadequate substitute for clinical attention. The need for human

contact by both parties to the patient – physician encounter goes well beyond

the patient’s need for reassurance and support … What experienced clinicians

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possess … is an immense and well-sorted catalogue of clinical cases and

the clinical judgment to know how to use it, and that store of knowledge is

activated by seeing, touching and questioning the patient.

Therefore, ‘what distinguishes persons from machines, no matter how cleverly

constructed, is not a detached, universal, immaterial soul but an involved situated

material body’ (Dreyfus 1999: 236). As a situated, material body, not a disconnected

mind, when faced with another body (the patient), the doctor views not independent

isolated parts or symptoms of the patient, but rather what he or she considers to be

the whole. It is due to this that, by using Gestalt psychology, Dreyfus (1999: 238) has

illustrated that:

in the perception of objects there are no neutral traits. The same hazy

layer which I would see as dust if I thought I was confronting a wax apple

might appear as moisture if I thought I was seeing one that was fresh. The

significance of the details and indeed their very look is determined by my

perception of the whole.

When doctors make diagnoses, they do not take note of individual traits and work

up toward a general picture. Rather, they work the other way around. What is

defined as a trait, what stands out or is noticeable, is defined by or given weight

by what the doctor perceives to be the whole. Isolated traits or symptoms have

no inherent worth or value to the doctor; what is important is the relationship

between the different parts of the whole that define which symptoms are important

and which are not. Dr Mira took note of Jonathan’s HIV-positive status and his

complaints, but it was the traces of evidence that led her to her diagnosis: the

dull rings around his eyes, the pale colour of his skin, the way he walked into

the room. When doctors make diagnoses, they collect traces of evidence which

define the relationships between the symptoms. These traces are by their nature

erasable (Derrida 2006/1967), unrepeatable and negatively defined rather than

representations based on a formalised, systematic schematic.3 Hence, different

doctors do not necessarily view the same disease in the same patient.

Conclusion

The standardisation of medicine, and the protocols used to achieve it, is based on a

particular cognitivist view of medical practice and procedure. In this view, doctors’

decision-making is limited to their ability to follow certain rules. In contrast to this,

I have illustrated how the material, day-to-day practice of doctors (both within and

outside their practices) diverges from strictly following protocols. I am not arguing

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that we do away with protocols; rather, I wish to illustrate the tensions found in the

use of protocols by doctors in the field, in contrast with their imagined or intended

uses by the experts who establish them. These tensions arise from the fact that

local, particular contexts and patients will always have more complexity than can

be modelled centrally, with the same logic applying to doctors who come with

the advantages of bodies of experience, both within and outside medical practice.

Therefore, the achievement of standardisation often is based not on perfectly

following rules, but rather on diverging from them (Craig 2000; Timmermans

& Berg 1997). There is thereby tension between a policy, created in a ‘neutral’

environment in order to govern thought, and how it grates up against the texture

of local reality. As a doctor working in the administration of the Global Fund in

South Africa argues:

The management of virtually every disease is based on ‘standardization’ of

treatment protocols, although to varying degrees. Those standards should

draw from international knowledge and demonstrated ‘best practice’ models.

However, what is possible in different countries (and often what is possible

in different areas within a country – South Africa being just one example)

varies depending on the resources that are available. Strict implementation

of international standardization is therefore seldom possible – best practice

models need to be able to be adapted to local settings.

(Personal correspondence, underlining in original)

A protocol, therefore, does not ‘arrive’ but is ‘produced’ within local contingency.

That is, when the attempt is made to implement a protocol, it has to contend with

existing structures, sometimes destroying them, sometimes appropriating them,

but often being appropriated by them. In this regard, achieving standardisation

does not rely on a central actor but is rather a distributed activity as it moves from

one actor to the next along its path (Timmermans & Berg 1997). Furthermore,

‘non-docile actants may well be a sine qua non for universality in practice.

Rather than being antagonistic to it, a certain looseness in the network may be

the preferred (or only possible) way to achieve standardization’ (Timmermans

& Berg 1997: 275). Albeit in a different context, Farquhar has also illustrated

that ‘everywhere and always, the transportation or globalization of powerful

languages, objects, facts, and systems has required translation, which … is always

a multifaceted transformation’ (Chapter 7 of this book, emphasis in original). In

this regard, a policy cannot be ‘followed to a T’ or enforced in a totalitarian fashion

in order for it to be successful. Looseness is required; a policy must be open to

interpretation and adaptation.4

Tinkering, having the leeway to adjust the protocol to unforeseen events and

repair unworkable prescriptions is a prerequisite for the protocols functioning:

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in these practices, the overall stability of the network is at the same time

challenged and dependent upon the instabilities within its configuration.

(Timmermans & Berg 1997: 293, emphasis in original)

Standardisation is predicated upon medical practitioners following protocols as

accurately as possible. However, as in the case studies explored in this chapter,

the success of this global management rests on doctors diverging from the order

as they interact with particular patients, in particular settings. The paradox,

therefore, lies in the fact that the success of a protocol sometimes relies on its

subversion. Standardisation should not be abandoned; rather what should be

abandoned is the certainty that arises from an overreliance on cognitivism and

current conceptions of medical practice. The control over resources and the

insurance provided by a strict standardisation becomes unethical, even in its

attempt to ethically provide healthcare to a population. I suggest, therefore, that

the ethical treatment of disease in a population requires a little more ‘looseness’

and deviation for standardisation to be possible, even if it implies a loss of

certainty and control over the distribution of resources.

Endnotes

1 The word ‘symptom’ has the Greek sumptoma (chance) as a root (Collins English Dictionary

2006).

2 I use the term ‘methodological’ to mean evidence based on a procedure or set method. Some

could use the term ‘empirical’ evidence to contrast with ‘intuitive’ evidence; however I believe

this would deny the empirical nature of intuitive decisions such as traces of evidence revealed

through touch or sight.

3 An interesting comparison can be made in this regard between the model of diagnosis I

am trying to develop here and that adopted in Chinese medicine. Farquhar (in Chapter 7 of

this book) argues, following her interlocutor Dr Lu, that a neat distinction between theory

and practice cannot be made. In fact, as Dr Lu points out, one must learn from the ‘objects of

practice, while engaged in practice’. The objects one engages with in practice cannot be easily

delineated. They are always excessive, due to the fact that they are relationally constituted

in the encounter between the medical practitioner and his or her patient, thus rendering an

ideal, ‘theoretical’ representation of such a complex relationship impossible.

4 One can see this looseness in a network in much the same way that ‘work to rule’ action

operates within factories. That is, as a form of strike, workers will follow the rules like

automatons and thus bring the factory’s production to its knees. This is because ‘designed or

planned social order is necessarily schematic; it always ignores essential features of any real,

functioning social order’ (Scott 1998: 6).

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References

Berg M (1995) Turning a practice into a science: Reconceptualizing postwar medical practice.

Social Studies of Science 25: 437–476

Berg M (1998) Order(s) and disorder(s): Of protocols and medical practices. In Berg M &

Mol A (eds) Differences in medicine: Unraveling practices, techniques, and bodies. Durham,

nC: Duke University Press

Biehl J (2004) The activist state: Global pharmaceuticals, AIDS and citizenship in Brazil. Social

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Craig D (2000) The king’s law stops at the village gate: Local and global pharmacy regulation

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fallacy of the level playing field. Boulder, Co: Lynne Rienner

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practices, techniques, and bodies. Durham, nC: Duke University Press

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The mIt Press

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Medicine and the Politics of Knowledge - Chapter 1

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Transcript of Medicine and the Politics of Knowledge - Chapter 1