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") 

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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. 

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. 

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.)

But back to our subject : you’re a patient, you’re facing a physician and you’re asking him your way out of illness.

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.  

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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. 

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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. 

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Language isn't neutral 

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. »

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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.

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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.

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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 ? »

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.

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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.

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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. 

Other online writings by Marc Zaffran (a.k.a "Martin Winckler")