In search of “non-disease”
BMJ 2002; 324 doi: https://doi.org/10.1136/bmj.324.7342.883 (Published 13 April 2002) Cite this as: BMJ 2002;324:883All rapid responses
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The notion of non-diseases raised by Smith [1] has interesting
parallels with recent debates of the representation of clinical findings
according to their semantics in formal coding schemes for use in
electronic medical records. The issue is critical in the design of
terminologies as they are increasingly used to populate clinical databases
with significant effect on data retrieval for patient care, audit,
research, decision support, epidemiology and management (e.g. the use of
the International Classification of Diseases (ICD) for national and
international comparisons); and commercial databases determining, as Smith
highlighted, eligibility for insurance and employment. Opinions of what
constitutes a disease or non-disease vary between professions, cultures
and over time. For example homosexuality was classified as a disease in
ICD-9th Revision but removed in the 10th Revision. Previous reports would
assert that the use of a formal semantic terminological model of disease
provides a valuable conceptual framework upon which judgements can be
measured. [2]
A disease can be defined as a class of concept describing states in
which there is an explicit or implicit pathological process causing a
state of altered homeostasis, which may have both a causative agent and an
associated morphological abnormality e.g. amoebic abscess of liver. A
distinction can be made between a disease (e.g. diabetes mellitus) and an
observation of a finding either “in vivo” (e.g. short stature), or “in
vitro” relating to a sample (e.g. raised blood glucose level). In some
circumstances this distinction is subtle if not pedantic. The finding of
“unable to hear” is different to the disorder of “deafness”, as the former
may have many causes some of which are temporary e.g. occlusion of the
external auditory canal by wax. A key principal that is hidden in this
issue is that of pathography which has diminished as a subject for
consideration in modern medicine. Pathography as Harris [3] has
highlighted is the study of the natural history or behaviour of disease
including the healing process. He argues that only with a full
appreciation of pathography can the applicability of any intervention and
its success be evaluated. Thus a further covert utility of identifying the
notion of a disease is that the clinician is able to predict possible
future behaviours and outcomes which are informative when judging the
options of treatment plans with the patient.
The explosion in bio-informatic data particularly with the delivery
of the human genome project has also challenged many pre-conceived ideas
about what is and is not a disease. The rich variability in our genetics
makes a mockery of the use “normal” and “abnormal” and pushes us to re-
define predisposition to disease in terms of deterministic and probability
values. Whilst the concept of a disease is certainly “slippery” it is also
a nettle worth grasping.
1 Smith R. In search of “non-disease”. BMJ 2002; 324: 883-5
2 Brown PJB, Sönksen P. Evaluation of the quality of information retrieval
of clinical findings from a computerised patient database using a semantic
terminological model. J Am Med Inform Assoc 2000; 7: 401-412.
3 Harris CM. Seeing sunflowers. JRCGP 1989; 39: 313-9.
Competing interests: No competing interests
Dear Sir,
Medicalisation and non diseases
Your new format BMJ has certainly come of age with the publication of
the most recent issue [13 April 2002]. Congratulations! My only caveat
to your otherwise admirable and comprehensive covering of the subject is
that just as trainee teachers should be compelled to read Deschooling
Society by Ivan Illich, so should medical students have his writings on
medical matters as required reading and be examined on the subject during
the course of their training.
I am, yours sincerely,
Tim Ashworth, retired Consultant Pathologist
London E14 6 NQ
Competing interests: No competing interests
Some years ago, and in The Other Place, I tangled with the use of
language in which to connote the problems people brought to doctors
(Lancet,1979 2, 1008-1010). An extended version of the arguments was given
in "One Child" (ed Apley J & Ounsted C SIMP pub 1982).It was the
product of a Sabbatical spent abroad where I felt that the language of
human sickness needed revision and argeement becasue it was so central to
what we thought we were doing.
I drew attention even then, 20 years ago, to the fact that doctors had
never been so successful in treating sickness but never so vilified for
what they cannot do. What they cannot do is regularly magnified by what
they can. Who else but a dotor is to tell people that it is not a dreadful
disease that is making them sick? Twenty years on, and in a worsening
environment of medicine, you see the issue as answerable by some sort of
word game.I hope it is a serious game.
The people who consult doctors do so because they think they are
Sick. Let them be called that. Among them you will find all the sorts of
variation of structure that have been referred to in the letters. But
careful investigation might reveal a relevant sructural change, Disease.
Or, they might only have a complelling story that cannot be structurally
substantiated but has dire effects on well-being, Schizophrenia for
example, an Illness. Or, as is most commonplace, they find that they are
uncomfortably placed in their Predicament and their body is speaking up
for them. Their distressing gut pain is one that speaks up for the deceit
in their marriage or is a response to chronic abuse of trust. Furthermore,
each human suffers their Diseases, expresses the ensuing Illnesses in
their own, unique Predicament. Easing that Predicament might be more
relevant than working on the Disease which might be past remedy. The
Predicament alone is a powerful vector of Sickness, as many of those
suffering in the war weary areas of the world would tell you.
No conflict of interest
Competing interests: No competing interests
Jean-Luc Godard famously said that although, of course, films had a
beginning, a middle and end, it was not necessarily in that order. The
AngloAmerican school of medical social (or cultural) anthropology which I
helped to found distinguished between sickness ,the bodily disorders based
on the social situation in which people most commonly found themselves
(emphasised in modern times first by Virchow); illness a patient- or
relative-perceived interruption to the flow of their functional health and
finally; uncovered by the doctor after consultation, a disease, an episode
with an end, a middle and a beginning, the first two of which doctors,
with a little help from their nursing friends might influence.
Later, I
learned from Professor Howie (1979) that general practitioners often
decided what to do or not to do (sometimes called prognosis) in the
presence of the patient and why they had decided to do it (sometimes
called diagnosis) taking thought after they had left the room, clasping
prescriptions in their hands and holding advice in their minds.
Ann
Cartwright's first 1967 survey of General Practice in a period when
Condoms were still called Preventatives (primarily of pregnancy, for STDs
Clean Living was still the ONLY Real Safeguard) or French Letters felt
that contraception was none of their business; By the time of her second
(with Robert Anderson in 1981), the advent of the pill made it clear that
it had become part of the prescription busines which was their very own.
Similarly I learned from Hilary Thomas that while diagnosis of pregnancy
with Xenopus toads was seen by GPs as a useful part of medical practice, a
chemist shop and blotting paper, required no exotic (ectopic) expertise.
When with Hugh Faulkner in the 1980's we asked Tuscans on behalf of their
local health authority, their four greatest medical needs. They listed
prevention of early pregnancies and motorbike accidents in youth and
separation from their families in old age and as an afterthought,
Cardiovascular disease. Diseases, then are processes the progress of
which can be legitimately or effectively monitored and ameliorated by the
medically qualified and licensed. No more illogical and unscientific than
the biological definition of species, which I was taught in the sixth
form, as anything which a properly qualified systematist recognised as
such. Disease is what doctors "do" to and with their patients and other
clinicians, it begins in and derives from practice, professionally and
politically approved and often, if inadequately, rewarded.
Competing interests: No competing interests
Dear Editor
There is growing concern about the toxic effects of chemicals on
human health and well-being, as well as to non-human animals and the
environment in which we live.
As a society we are not sufficiently aware of what is being done to us by
industry and regulatory authorities in this sphere.The indiscriminate use
of chemicals and chemical pesticides are having a devastating effect on
our health and on that of our children. Official statistics reveal that
within the EU today, over one million people die prematurely every year as
a result of consuming chemically-laden products. In addition, acute
toxicity from prescription medicines now rate as the fourth leading cause
of death in the EU, claiming 120,000 lives each year, a figure which could
probably be doubled if we include the chronic,toxic effect of drugs.
Many consumer products and prescription medicines have not been
properly evaluated despite extensive 'safety' testing. Since toxic risk
assessment is carried out using animal models, as has happened over the
past 100 years, one must conclude, that reliance on the animal model for
the study of toxic effects in man represents a clear danger to public
health.
We should rethink the proposed plan by the EU requiring 100,000
chemical substances to be tested on live animals, in order to assess their
toxic risk for man and the environment.The projected tests, based on
animal models, are scientifically irrelevant for human beings. This means
EU regulatory authorities will continue to formulate public health
policies on the basis of unreliable animal toxicity data, ignoring the
much faster and far more scientific methods already available for
assessing short and long-term human toxic risk assessment. The immediate
adoption of these methods would add significantly to consumer safety and
should therefore be considered by the EU as an absolute priority.
In the US, the EPA requires more chemical toxicity tests on animals
than any other federal agency. These tests involve forcing animals to eat,
inhale, or be
injected with chemicals. An undisclosed number of animals, likely to be in
the millions, die slow and painful deaths in these tests. And with all
that, the EPA has not banned a single industrial chemical in more than 10
years.
Rather than working to reduce emissions and prevent human and
environmental exposures to toxic chemicals, the EPA has instead chosen to
establish "acceptable" exposure levels based on the results of misleading
animals tests. The EPA pours millions of taxpayer dollars into cruel and
wasteful animal experiments, while spending virtually none of its $500
million annual research budget on the development of non-animal test
methods.
Yours Sincerely
S. Edwards
Competing interests: No competing interests
The problem should be viewed also from the point of those who suffer
from and pay taxes for or work instead of "patients" thinking they have a
right to be sick just because they are strongly neurotic or obese, e.g.
I agree that an Alzheimer's disease patient is happier than a person
recognising his severe "chemical" illness. But what about those having
that "secondary" advantage of not being sane?
I refuse to treat non-compliant persons wanting to be regarded as sick as
long as they themselves are not willing to change anything within their
lifestyle. And these, at least in my patients, are the majority of
insuline resistant so-called diabetes patients and of those complaining
about vertigo, insomnia and similar possibly psychosomatic disoders.
Competing interests: No competing interests
Dear Sirs
We have been taught and now teach that a disease should have four
components
A site of the lesion
A nature
A pathophysiology and
A dysfunction
and all together comprise of "a " disease for unless there is dysfunction
there can be no dis-ease or if there is dysfunction as in ageing but no
clear identifiable site or nature it cannot be disease. By default any
situation where these four components are not there, there is no disease.
This may be an attempt at oversimplification but conceptually sound,
however there are many diseases which have not been fully worked up and
all these four components
are not known.
Ashok Chandra
Competing interests: No competing interests
It is official at last! How comforting to know that our applications
for mortgages and insurance will not be rejected now that big ears,
ugliness and freckles are classified as non-diseases. With the de-
medicalization of pregnancy, women might be wondering whether to call in
the butcher the baker or the candle stick maker for the delivery, and who
knows, in the not too distant future, butchers might have signs in their
windows offering diabetics freshly harvested pig cell injections.
Dr. Richard Smith ends his clinical review “In search of non-
disease”, with the following: “Surely everything is to be gained and
nothing lost by raising consciousness about the slipperiness of the
concept of disease.” It seems to me, he missed the boat. I doubt anyone
believed the listed 20 top non-diseases were diseases in the first place,
and to examine de-medicalization, one must first look at medicalization.
To demonstrate the point, I refer to a couple of lines in a movie
entitled “Critical Care”. A young doctor asked the question, “If the
patient has no chance of recovering, why proceed with the treatment?” His
elderly colleague replied, “Where have you been, boy? It’s called
REVENUE....”
For many years, the pursuit of revenue has caused a gross increase in
iatrogenic statistics. That makes it hard to accept the suggestion in Dr.
Smith’s review, that malingering patients are in some way responsible for
medicalization. It might even be regarded by some cynics as pure damage
control.
Dr. Smith maintains that once labelled with a disease, “You are a
victim. You are not just a person but an asthmatic, a schizophrenic, a
leper....” That may be, but society demands labels, and the medical
profession demands that we fall into a category that can be labelled. If
a label is not attached, then the sick are regarded as malingerers and
denied the assistance that allows them to exist. A prime example is ME -
victims of it, suffer far more than just the disease.
One need go no further than this edition of the BMJ to find out a
little about medicalization for the purpose of selling drugs, and the
danger to which people who take the drugs, are exposed. I refer to an
article in the education and debate section: “Selling sickness: the
pharmaceutical industry and disease mongering” R. Moynihan, I. Heath, D.
Henry. Strangely, it doesn’t mention malingering.
Gurli Bagnall,
Patients’ Rights Campaigner,
Otago
New Zealand
Competing interests: No competing interests
EDITOR - The concept of non-disease (1.) requires a
21st-century set of Koch's postulates, or at any rate a
little more clarity. Here is an attempt at some working
definitions:
Illness: any condition associated with emotional or
physical distress which the patient wishes to
medicalise, for whatever reason;
Syndrome: a collection of symptoms and/or signs
which are associated with one another and which may
or may not result from a single aetiology;
Disease: an illness or a syndrome for which there is a
well-established aetiology, or for which a medically
definable aetiology is generally accepted to exist even if
not proven (but excluding 'non-disease (boundary
dispute)' as defined below);
Non-disease (disputed aetiology): an illness or
syndrome for which not only is there is no well
established aetiology, but also the existence of a single
aetiology is a matter of dispute (note that the existence
of the disease as a pathological entity is disputed, but
not the existence of the illness or syndrome; example:
myalgic encephalomyelitis);
Non-disease (boundary dispute): an illness in which
there is disagreement about whether or to what extent it
should be medicalised (examples: psychopathy,
ageing, childbirth);
to this list we may add:
Illness by proxy: an illness as defined by relatives or by
society or by the medical profession but not necessarily
by the patient (example: homosexuality);
and for completeness:
Non-illness: any condition without symptoms which the
patient wishes to medicalise (example: request for a
sick note for hypertension).
Dr Martin Dace - General Medical Practitioner
Waldron Health Centre
Stanley Street
London SE8 4BG
Conflict of interest: none.
1. Smith R, In search of "non-disease", BMJ 2002;
324:883-5 (13 April)
--
Competing interests: No competing interests
On non-diseases and medicalisation
Dear Sir
As a medical sociologist, I read with more than passing interest your
editorial on “non-diseases”. The definition given for a non-disease is “a
human process or problem that some have defined as a medical condition but
where people may have better outcomes if the problem or process was not
defined in that way”.1
The editorial also mentioned the “increasing tendency to classify
people’s problems as diseases”1 or what sociologists call the
“medicalisation” of social problems. Good examples of medicalisation
include “gambling addiction”, “sexual addiction” and “domestic violence”.
There is a concept from contemporary sociology that may be a useful
tool for healthcare professionals when pondering over the issue of
diseases, non-diseases and medicalisation, i.e., the “social construction
of reality” approach. Using this approach, one is reminded that certain
conditions are defined as “diseases” in some societies but not in others,
and that definitions can change over time within one society. Thus, a non-
disease such as overweight/obesity has been medicalised in countries such
as Britain and this medicalisation is probably linked in some way to
increasing rates of eating disorders such as anorexia nervosa among
females and even some males (note that I consider overweight/obesity to be
a non-disease while acknowledging that it is a risk factor for certain
diseases such as diabetes mellitus). Interestingly enough, in traditional
Samoan society, overweight/obesity in women is considered to be desirable
and such women are considered to be “beautiful” in the eyes of Samoan men.
A very fascinating case of social construction of reality indeed! The
chances are that this traditional notion is changing or even disappearing
with increasing “Westernisation” of Samoan society.
The usefulness of this concept is illustrated when we apply it to
other phenomena such as “substance abuse”, e.g., we witness the gathering
strength of the anti-tobacco movement in the United States today as a
result of public health concerns over the effects of tobacco on smokers
and bystanders. However, in the past, tobacco smoking was not considered
to be an unhealthy practice and was even associated with sophistication.
Another example would be the negative perception of the contemporary
American public toward drugs like heroin, cocaine etc. In the past, such
drugs were not considered dangerous and were added to cough syrup
(heroin), patent medicine (morphine) and even Coca Cola (cocaine)!2 I rest
my case.
Competing interests: none
References:
1 Smith R. In search of non-disease. BMJ 2002; 324: 883-5 (13 April).
2. Savage D. Panacea one day, poison the next.
http://www.smh.com.au/news/0001/01/world/world11.html
Competing interests: No competing interests