Right to refuse

It seems that language guides are the in-thing and I’ve written about a few already. I still think they are pointless, I think counter useful, make no sense at all. But when I looked at another one, I thought there was another point to be made. A point about power.

The language guide starts like that:

I didn’t flinch when a clinic assistant recently brought me intake forms on a patient I was about to see, matter-of-factly noting, “FYI, she refused vitals.” (…) To the layperson, a word like “refuse” might conjure up the notion of a cross-armed, defiant, and emphatic stance against something “reasonable” and “right.”

The author continues arguing for new words and phrases when speaking about or to patients (the two context are very different, which seems to be lost on the author).  Of course, it also turned out that the patient who ‘refused’ didn’t refuse at all, they all held hands and lived happily ever after. And in order to make sure that we all live in universal happiness, the author suggests that the verb refuse should be changed to:

“Patient declined,” or “Patient preferred not to/would rather not”

This is because, the author argues, such phrases imply that

patient and clinician worked together in considering recommendation and alternatives.

And here is my question. What if I do refuse?! Believe me, as a patient, I have done quite a lot of refusing, challenging, and telling medics to go to hell (euphemistically or not). And it really irritates me no end that there comes a physician, tragically dulled, who wants to take away my right to tell him to go to hell. Not only do I want to be able to refuse, I also want you to understand that I refused and, hopefully, to reflect on my refusing.

But what is fascinating in all this is the explanation. The new phrases with the use of ‘decline’ or ‘prefer not to’ are not claimed to represent reality better. Oh no, they simply construct a lovelier reality,  in which medics and patients move in slow motion and give each other flowers, smiling all the time, while you can hear soft music in the background. Under the guise of caring for patients by caring for language, the author simply wants to paint a ‘better’ reality.

The author of the language guide seems not have considered that not all patients and clinicians “work together in considering recommendation and alternatives”.  He also seems not to have stopped to consider the perspective of the patient. I am simply astonished by the simplicity and certainty of statements that the patient didn’t refuse. Just like that.  The issues of his interactional and institutional power, as well as power to name things, simply don’t arise for the author.

Similarly, it seems not to register that I, a patient, might have a different opinion on his proposals. Oh no, he knows best how to speak about me and to me. I find it unbelievable that the author does not see that saying:

Patient/family want to be aggressive with treatment.

is very different from either of the two options below:

The patient/family are struggling with the illness, so I am going to discuss it and the options more with them,

The patient/family believe we should do more, so we need to discuss the options further.

And that his suggestions do not do much more than take away my right to challenge, to direct, to speak forcefully. Oh no, for Epstein, I am supposed to calmly and meekly believe things, and even if I don’t, he will simply help me on my way to meekness, as he makes sure that all-happiness we are working on is also constructed by him not having to talk to me directly. If I heard a doctor say:

While there are unfortunately no disease-modifying options (or “no ways to slow your disease”), we can/will always be here to treat symptoms and assist with concerns.

In the context of terminal illness, I would find it very hard to restrain myself and not tell him in brief, curt and unparliamentary words what I thought of them. These are words of a doctor who doesn’t want to be honest with me, these are words of a doctor who cares much more about them and their comfort and not about me. I hope I will never hear a clinician speak to me like that.

And so, we come to a conclusion. In a way, it could be: stop writing language guides. They have nothing to do with shared decisions, patient empowerment or whatever other spin you would like to put on them. Language guides are not much more than an exercise of your power, they are an imposition of a linguistic point of view which comes from you. Put differently, have you ever seen an institutionally-endorsed language guide from a patient? Indeed, the author reporting on a recent survey of words that patients don’t like was still happily using one of those words (I wrote about it in this post). She knew better!

The ability to blank the patient has no bounds and there is not language guide that is capable changing it!! Instead of writing language guides, I wish medics wondered how to speak to me, what they wanted to achieve when speaking to me. Whether you use this word or another really doesn’t matter (within the normal rules of being civil and polite), it’s much more important that you understand that I am not a notional half-witted patient to whom you need to speak veeery slooowly. Or that you must speak ‘in my language’ because I will not understand you.

But this time I’ll end with a more general comment. Language guides will continue to be written, no matter what I or linguistics will say or write. This is because they offer security. As long as you say this word, ask this question, you will be fine. Language guides deal away with the need to consider me and how to talk to me. Language guides are the natural companion of the communication skills guides which have similar functions.  As long as you mirror, rephrase, lean forward and make a pained expression, you are a great communicator.

Alas, reality is much more complex and messy. And no guide will protect you from my comment on how you speak. Because seeing how you deftly (or not) weave the ICE questions into the conversation is just really funny. Clinical communication, whether with me or with other clinicians, is tough, very tough. I understand it very well, I suspect that many other patients also do.  And so, instead of writing guides, how about training to be human, you know, like me. And leave my right to refuse alone.

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