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Fritha Langerman. System of human knowledge: Reason. Linocut from the exhibition, The Knowledge
Chambers (2007), and reproduced with permission of the artist.
Fritha Langerman. System of human knowledge: Reason. 2007. Linocut.
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Image from the exhibition Subtle Thresholds, reproduced with permission of the artist, Fritha Langerman.
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)
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1
The rings around Jonathans 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): 222240. 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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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 patients body; and the time
spent misdiagnosing patients costs them their lives. As a doctor working with AIDS
patients, DrMira knew that somebody in Jonathans condition would not be able
to produce sputum due to the workings of HIV on the immune system. DrMira
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
DrMira visited the hospital, Jonathans condition had improved considerably. Yet
DrMiras 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
Jonathans life. Other doctors lacked this insight.
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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 reasonersto determine the best action
to take when knowledge depends on circumstance.
(Montgomery 2006: 45, 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 isthat [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 fromorthodoxy.
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 worksAt 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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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
patients 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, Dreyfuss being just one, we begin to see the difficulty of
a comprehensive standardisation of medicine.
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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 treatedFor 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 statisticotuberculosis to that of statistico-HIV or even statistico-HIV/tuberculosis XDR
(adrug-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 worlds 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 DrMira; Louises psychiatric diagnosis did not take precedence for
DrGous. 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, DrMira 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 DrMira
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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 lawDodier 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 middleaged 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 (DrGous) 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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DrGous took when he placed both patients on ARVs was not one acknowledged
by protocols but one that DrGous, in his experience with both patients,
determinedhimself.
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 states 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 DrMira, 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 DrMira and, although she could not fulfil the administrative requirements
for this particular risk group, she diagnosed Jonathan correctly. In an interview
after meeting Jonathan, DrMira 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, DrMira 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 cant even write in
words[Youre a photographer?]Yes, thats it, and my interior designer
said: you have a discerning eye, and I do. I do, Im telling you, there are TB
symptoms that I cant put on a list, which is in the way they walk into the
room, the way they look at you, the way theywithout 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)
DrMira 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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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
SouthAfrica 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, whichis 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).
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.
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 DrLu, that a neat distinction between theory
and practice cannot be made. In fact, as DrLu 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.
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 factorys 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: 437476
Berg M (1998) Order(s) and disorder(s): Of protocols and medical practices. In Berg M &
MolA (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
Text 22(3): 105132
Craig D (2000) The kings law stops at the village gate: Local and global pharmacy regulation
in Vietnam. In Whiteford LM & Manderson L (eds) Global health policy, local realities: The
fallacy of the level playing field. Boulder, CO: Lynne Rienner
CSDH (Commission on Social Determinants of Health) (2008) Closing the gap in a generation:
Health equity through action on the social determinants of health. Final report of the
Commission on Social Determinants of Health. Geneva: World Health Organisation
Derrida J (2002) Negotiations: Interventions and interviews, 19712001. Rottenberg (ed. &
trans.). Stanford, CA: Stanford University Press
Derrida J (2006/1967) Writing and difference. London: Routledge
Dodier N (1998) Clinical practice and procedures in occupational medicine: A study of
the framing of individuals. In Berg M & Mol A (eds) Differences in medicine: Unraveling
practices, techniques, and bodies. Durham, NC: Duke University Press
Dreyfus HL (1999) What computers still cant do: A critique of artificial reason. Cambridge, MA:
The MIT Press
Dreyfus HL & Dreyfus SE (1986) Mind over machine: The power of human intuition and expertise
in the era of the computer. New York: The Free Press
Dreyfus HL & Dreyfus SE (2002) From Socrates to expert systems. Philosophy (24)1: 19
Eddy DM (1990) The challenge. Journal of the American Medical Association 263: 287290
Harper I (2005) Interconnected and inter-infected: DOTS and the stabilization of the
tuberculosis control programme in Nepal. In Mosse D & Lewis D (eds) The aid effect:
Giving and governing in international development. London: Pluto Press
Horton R (2007) Whats wrong with doctors. The New York Review of Books 54(9): 1620
Montgomery K (2006) How doctors think: Clinical judgment and the practice of medicine. Oxford:
Oxford University Press
Mosse D (2004) Is good policy unimplementable? Reflections on the ethnography of aid
policy and practice. Development and Change 35(4): 639671
Scott JC (1998) Seeing like a state: How certain schemes to improve the human condition have
failed. New Haven, CT: Yale University Press
Timmermans S & Berg M (1997) Standardization in action: Achieving local universality
through medical protocols. Social Studies of Science 27(2): 273305
Van der Walt H & Swartz L (1999) Isabel Menzies Lyth revisited: Institutional defences in
public health nursing in South Africa during the 1990s. Psychodynamic Counselling 5(4):
483495
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