Informed consent and the (Alien) Medical language
This paper was my keynote speech for the 2017 Conference of The Health Care Access for Linguistic Minorities (HCALM) Network (McGill University,)
Montreal, QC, Sep. 28-30, 2017.
Marc Zaffran, MD ("Martin WInckler")
Stranger in a strange land
On top of that, you’re
asked to make hard and rational decisions. Unfortunately, since 1969 and Paul Mazursky's Bob & Carol & Ted & Alice, we all know nobody makes
rational decisions while naked and in bed.
But back to our
subject : you’re a patient, you’re facing a physician and you’re asking him
your way out of illness.
*
Language isn't neutral
The Alien Language
Montreal, QC, Sep. 28-30, 2017.
Marc Zaffran, MD ("Martin WInckler")
*
Stranger in a strange land
Imagine you’re lost in a
foreign country and you stop someone in the street to ask your way. You don’t
speak the local language and the person you hailed doesn’t speak yours. What could happen ?
They might not stop,
because they won’t be bothered.
They might turn away
because they are frightened : you are an alien, after all. You might be
trying to take advantage of them.
They might look at you
with blank eyes because they don’t understand what you’re saying and both of
you will look foolish and embarrassed.
In the best case
scenario, they might understand exactly what your problem is, because you’re
showing them a map while trying to say a place’s name that is totally
impossible for you to pronounce correctly, like
and they might decide they’re going to give it a try, and
explain how to get there, the best way they can.
When your question is
« Where do I get to this place », it’s usually simple. Unless the
place in question is unknown to most mortals in the area, or very far, or
unsavory, the person to whom
you’ve asked will try to explain where it is with a combination of simple words
(right, left, up, down, north, south) and corresponding mimics and gestures.
Being a patient – especially in the hospital - is like being a stranger
in a strange land. You’re sick, you don’t know anyone around you, and under the
hospital gown, you’re naked.

Mind you, being totally
clothed doesn’t change a thing when you’re facing a physician : they
probably saw you naked earlier, they have this on you. Each time you’re facing them, you will
feel naked. You’ll somehow have the feeling they have some X-ray vision that
sees inside your body.
(Fortunately we’re in
Canada. In France, it’s much worse. For the past eighty years or so French physicians
have been influenced by freudian and lacanian theorists. Which means not only
do they know what you look like when you’re naked, they can also read your mind
and tell all the naughty things that you’d like to do while you’re naked ! Or so they think.)

Being ill is pretty much
like being stranded in a hostile environment and wanting to go home. To get
there, you have to walk to the other side of this.
Only, when you get closer, it looks much more like this.
Of course, there are paths to get to the other side, and physicians are here to help you choose the
best path(s) to make safely your way back home.
*
Your guide the physician
Physicians have a lot of advices to give.
When the illness is mild, some of these advices are pretty straightforward :
« Take an antacid and stop eating so many jalapenos » or « Bed
rest, aspirin, chicken soup ».
Some of the advices are more complicated to
choose from.
« You need surgery or chemotherapy or both. Neither are without
risk, the surgery has a 1-in-10, 000 chance of unpredictable death by anesthesia ;
the chemotherapy has a bunch of nasty side-effects - and since you’ll be enrolled in a
controlled trial, you might not even be given the new, hi-tech, promising
life-saving drug but the old, less-than-satisfactory one. So we need your
consent. Sign here ! »
Yes, physicians need your consent.
Your informed consent.
Today, in countries such
as Canada, informed consent is mandatory for all medical decisions involving
patients.
And physicians should
obtain from patients informed consent for all
medical procedures that they offer to perform.
*
To Inform and To Consent
If you look at the phrase
« Informed consent »
consent
is pretty simple : you, the patient, agree or you don’t. It’s Yes or No.
And when it’s not 'Hell, Yes !' it’s No !
And it can become No at any moment after you’ve said Yes.
And there are
right and wrong manners to obtain consent
because consent in the medical setting is EXACTLY like
consent for sex.
So, as far as consent is
concerned, there’s no great effort involved.
But in order to give
consent, first, patients have to be
INFORMED
And for that, they need all the appropriate, truthful, unadulterated, fully-disclosed information about what's in store for them.
The
« informed » part thus involves both giving (by the physician) and understanding (by the patient) – which means
that both parties
have a lot of work to do.
Understanding the information – in essence, what is at stake (or who is
at the stake…) - is the patient’s responsibility.
It is often a challenge : when you’re sick, you have a lot to take in and to
deal with, including work, family, money issues and so forth. And remember, you’re
naked.
Giving information that is understandable
is the physician’s responsibility and it is a professional obligation.
It should be a no-brainer, provided that physicians know the information they are supposed to give you. Unfortunately, they don’t always know. Recently in France and England, it was revealed that thousands of women suffering from epilepsy and taking valproate had not been told that if they decided to get pregnant, the drug could induce severe birth defects in their children.
It should be a no-brainer, provided that physicians know the information they are supposed to give you. Unfortunately, they don’t always know. Recently in France and England, it was revealed that thousands of women suffering from epilepsy and taking valproate had not been told that if they decided to get pregnant, the drug could induce severe birth defects in their children.
Even when physicians know the information they’re supposed to give you, to reach informed consent, you need :
- Mutual respect and trust
- Enough time to share information,
to answer questions, express concerns, etc.
- Reciprocal support and
encouragements (Patients need to feel that physicians are here to help. Physicians
need to feel that patients want them to help. )
- Patients and physicians’
minds set on a common goal and a common vision of the issue at hand.
In a nutshell :
Patients and physicians need
to speak the same language.
But Ay, there’s the rub !
Today, neurolinguistics research suggests that language shapes
thinking. Different languages breed different forms of thinking.
In
« How does our language shape the way we think? », Edge, 6.11.09] psychology and neuroscience professor and researcher Lera Boroditsky writes :
« People who speak different languages do indeed think
differently and (…) even flukes of grammar can profoundly affect how we see the
world.
(...)
Take
grammatical gender. In Spanish and other Romance languages, nouns are either
masculine or feminine.
(…)
What
it means for a language to have grammatical gender is that words belonging to
different genders get treated differently grammatically and words belonging to
the same grammatical gender get treated the same grammatically.
For
example, when asked to describe a "key" — a word that is masculine in
German and feminine in Spanish — the German speakers were more likely to use
words like "hard," "heavy," "jagged,"
"metal," "serrated," and "useful," whereas
Spanish speakers were more likely to say "golden," "intricate,"
"little," "lovely," "shiny," and
"tiny."
To describe a "bridge," which is feminine in German
and masculine in Spanish, the German speakers said "beautiful,"
"elegant," "fragile," "peaceful,"
"pretty," and "slender," and the Spanish speakers said
"big," "dangerous," "long," "strong,"
"sturdy," and "towering."
This was true even though all
testing was done in English, a language without grammatical gender. (…)
In
fact, you don't even need to go into the lab to see these effects of language;
you can see them with your own eyes in an art gallery. Look at some famous
examples of personification in art — the ways in which abstract entities such
as death, sin, victory, or time are given human form. How does an artist decide
whether death, say, or time should be painted as a man or a woman?
It turns out
that in 85 percent of such personifications, whether a male or female figure is
chosen is predicted by the grammatical gender of the word in the artist's
native language. So, for example, German painters are more likely to paint
death as a man, whereas Russian painters are more likely to paint death as a
woman. »
*
The Alien Language
Language is
in no way a "neutral" way of thinking - or of communication. Which means that to be fully and truthfully informed, you
have to be spoken to in your own language.
The problem is :
Doctors don’t speak their patients’ language.
They speak an alien language
called Medical Jargon.
It’s a little bit like
when British people and Americans use words that don’t mean the same thing in
each language :
If you say
« College » in England, it doesn’t mean the same thing as in the
United States.
Corn means wheat in England, oats in Scotland and Ireland
and maize in the US.
Similarly, and sometimes
unfortunately, Doctors use a word to designate something different than what
people usually mean by that word.
To take a most unfortunate example, whereas laypeople use the word :
« Miscarriage »
Doctors use the word :
« Abortion »
Besides the
confusion there may be between two meanings of the same word, let’s look at
what happens when they use their own jargon.
Let’s consider a common
medical expression :
Myocardial
infarction
These
are two strange words for non-physicians. You have to know that the « myocardia » is the heart muscle and that "an infarction" is the
downstream tissue damage after a clot develops in an artery.
Many patients will
probably know – or guess – that MI has something to do with what they call a
« heart attack », because they’ve watched ER or House, M.D. or Grey’ Anatomy.
But will they understand
it the way a physician understands it ?
For most of us, a heart attack is an incident involving pain in the chest, a feeling of general
weakness, vertigo, nausea, sweating, the sensation of increased or decreased
heartbeat, oppression
and fear.
We usually picture it like this :
Or like this :
For a physician, a myocardial infarction looks pretty much like this.
Now, let's take a look at the medical definition
of a myocardial infarction
Irreversible necrosis
of heart muscle
secondary
to
prolonged ischemia
This definition includes
one ominous expression ("irreversible necrosis") and at least two words that need
an explanation ("necrosis" = cellular/tissular death ; "ischemia" = insufficient or absent blood flow).
Of course, most doctors
don’t tell the patient they’ve had a myocardial Infarction. They say,
« You’ve had Heart attack ». But they keep thinking in their alien language.
In their language,
« Myocardial Infarction » is not only a combination of two words, it
is one that is evocative, for a physician, of a longtime ongoing process.
This process is also
synonymous of risk factors which point to the past and present life of the
patient
and also
towards his future (dietary restrictions, medical treatment, coronary bypass
surgery, etc.)
This is pretty much what
the average physician has in mind
when they talk about myocardial infarction. But what does the average patient have in mind ?
Well, the thing is : There is no
average patient ! Myocardial infarction, just like « Heart attack »
probably means something specific, unique, personal for each patient who hears the phrase.
*
Cognitive biases
Let’s go back to gender.
For a long time, myocardial infarction was supposed to be an exclusively male
problem. We know today that it isn’t true : women suffer from myocardial
infarction too. But they are still often underdiagnosed because of this gender
bias in medical thinking.
So doctors don’t only
have to speak the same language as their patients, they also have to think without
bias.
The main bias that
cripples the thought of most doctors is to think that patients would
necessarily agree with the way they, the Doctors, see the world. This is what social psychologists call a "False-consensus effect". (Physicians are crippled with many cognitive biases - the consequences of which their patients suffer more than their fair share.)
When you say the
word « heart », most people visualize this
while physicians see this.
Do they really see the world the same way ?
In order to make
patients understand what they’re talking about, physicians should know that
what they both have in mind is very different… and they should go and find
common grounds, words with which they can address both the medical aspects and
the personal aspects
of the problem they’re dealing with.
*
Translation(s)
For a few years in the
90s, I was a translator. I translated (from English to French) medical treaties, comic-books, mysteries, and a few novels.
When you translate, you must have a very good understanding of the language one
you’re translating from), a very good knowledge ofthe one
you’re translating to), you must be ready to do a lot of research and it helps to have a good imagination.
The word itself, "translation", is very evocative : in geometry, it means, litteraly, « moving a figure from one place to another without changing its shape ».
When you translate, you take
the meaning of the word and you place it litterally in another setting – another language – or we might say in
another con-text.
One of the books I had the chance to translate was David Markson’s fine novel Wittgenstein’s
Mistress.
On the very first page, he wrote these enigmatic words :
« Time out of mind.
Which is a phrase I suspect I may have never properly understood, now that I happen to use it.
Time out of mind meaning mad,
or time out of mind meaning simply forgotten ? »
Which is a phrase I suspect I may have never properly understood, now that I happen to use it.
Time out of mind meaning mad,
or time out of mind meaning simply forgotten ? »
For a period of time
I agonized over the phrase « Time out of mind ».
There isn’t an equivalent of that phrase in French. Or so I thought. Until I stopped
trying to find an equivalent of the whole thing (or of each word) and thought I could translate it.
And found a perfectly
good solution in French :
"Time out of mind" = "Un temps fou"
"Un temps fou" means a very long
time, and the word « fou » means "crazy, mad" in French.
To be a competent
translator, you have to think like the writer (or the character) you want to translate.
*
Translating medical language
I became conscious of
the necessity of not only speaking the same language but also of thinking like
patients during my years (1983-2008) as a GP at the General Hospital's Women’s Health clinic in Le Mans, France.
I was prescribing
contraceptives all the time, but I found I had a hard time explaining to
patients or students how hormonal contraception like « the pill »
worked. What I found in medical books looked pretty much like this :
It didn’t make much
sense, and I was totally unable to explain something that I didn’t even understand
myself. Until I thought « Why try to explain it ? Why not translate it. »
And so I did, in two
sentences.
Pregnant women don’t ovulate.
(They can’t get pregnant with a second fetus while already pregnant.)
A woman who's on the pill doesn’t ovulate
(and can't get pregnant)
because the
pill’s hormones
make her body believe
she’s pregnant.
The nice thing about
this kind of explanation – which is a verbal translation of the
« Feedback Loop » above, is that everyone
can understand it. Doctors and patients alike.
When
physicians translate their alien language in plain language, everyone
is the better for it.
*
Hidden meanings
In the Women’s Health
clinic, patients often came in with surprising complaints such as
« Je ne supporte plus ma
pilule ».
(In English : « I can’t stand my contraceptive pill anymore. »)
Most physicians
(including myself, at first) visualized this :
and reacted by saying : « Oh, you suffer from side-effects ?
I’ll just prescribe you another brand ! »
I did that a few times
until I saw that the patient looked at me with blank eyes and I realized it
didn’t mean what I thought they meant.
So I asked them :
« What do you mean ? »
Here are some of the answers I heard :
"- I don’t feel like having sex. It started when I stopped using
condoms and went on the pill. Do you think there is a connection ?
- I want to get pregnant and my husband isn’t ready.
- I’m afraid being on the pill for so long will alter my
fertility.
- I can’t stand to have sex with that guy anymore.
- I don’t want to keep taking hormones.
- I don’t want to have children. Ever. And even though I’m on
the pill I’m scared it’s not enough to protect me from pregnancy. "
In order to inform patients
– in this case, patients who have different problems expressed through one
singular sentence -, you have to know what they have in mind. And for that, we
have to ask.
Doctors should not only
translate their Alien language to patients, they should also learn their
patients’ language in order to understand how they think.
To obtain informed
consent, both parties have to be
informed.
Patients have to be informed of what physicians know, and Doctors
have to be informed of what patients think.
In a nutshell : a doctor and a patient should
always share what they each have in mind.
Marc Zaffran, M.D.
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