Citizen Patient: Empowered and Unempowered

Empowered. Unempowered.

Engaged. Disengaged.

Educated. Uneducated.

Enlightened. Unenlightened.

Electronic (digital). Analog.

Words. Words matter. Words matter because they have the power to do completely different things, like: clarify and confuse.

Does it matter what we call human beings who have medical conditions? Are they patients? Do we use qualifying words to describe them? Empowered patient? Unempowered patient?

Lately there’s been words about the word ‘e-patient’. “Should we use this word?” “Shouldn’t we use this word?”

Does it all matter? I think it all depends on who you are.

If you’re my provider, you can call me a muther effer – I don’t care, as long as you know what you’re doing, assess me appropriately, answer my questions or point me to reliable resources, educate me…But that’s me. Not you. Or him. Or her.

Recent discussions and the meta-discussions about them have raised questions about the appropriateness and necessity of words like ‘e-patient‘. Susannah Fox proclaims:

New concepts need gimmicks. Proven concepts do not.

An eternal truth, with one exception: a proven concept without an audience might still need a gimmick. And perhaps all the discussion about these words comes down to the desire for a noble gimmick. Not an easy desire to satisfy. It’s a tenuous endeavor, a marketing problem really – one which can be brilliantly executed…sadly, more often botched.

Here are two other voices – read their stuff and you’ll be able to follow all the necessary links.

Bryan Vartabedian (@Doctor_Vasks if the e-patient revolution is over. I didn’t know there was a revolution but he makes a solid point about the commonness of analog and the perils of the proverbial echo chamber. He also notes that many patients aren’t using electronic resources – we could call them Analog Patients I suppose.

In a French-roasted post, Daphne Swancutt of HealthIntel, makes the case for not euthanizing the ‘epatient’. In it, Daphne may have identified the key pivot in the chatter over words:

One day, we’ll get to a point when all patients are e-patients. Perhaps then, we go back to the future and begin anew with “patient,” which will implicitly suggest e-patient. But, we’re not there, yet. Not today. Not tomorrow. Likely not next year.

That’s it: she’s acknowledged that ‘epatient’ isn’t ideal but that perhaps – for now – we do need some convenient call-bell to signify and communicate where we’re coming from so that providers and others invested in our well-being can take the most appropriate courses of action with us.

Now I don’t know if ‘epatient’ is that bell (you can read my preliminary views on what I coined the fPatient here), but her argument seems to be at the crux of the matter. The trick lies in how proliferative the word becomes – and if the sender and receiver are on the same page of meaning.

Ideally, healthcare professionals should have the training and experience and therapeutic communication expertise to treat their patients in accordance with their unique array of characteristics – we all have different communication styles, personalities, levels of passivity or activity.

Unfortunately, when they don’t, patients (my God -what word do I use in this post?!) are left to their own resources. And that’s where adjectives and letters might make a difference: those with the resources can ring their call-bell to others – to rally support, seek curated information, learn more about their condition, etc.

HUMPTY DUMPTY HAD A GREAT FALL

There is no right or wrong answer here. What matters is meaning and communication and citizenry (more on that word in a moment). Perhaps an amusing moment from Through the Looking Glass is worth invoking:

`When I use a word’, Humpty Dumpty said, in rather a scornful tone, ‘it means just what I choose it to mean – neither more nor less.’

In its simplest abstraction, seeking and receiving healthcare is about finding and getting solutions to problems.

Some people are actively engaged in their healthcare. Other’s aren’t. Engaged versus disengaged.

Some people use digital technologies. Others: not so much. Electronic (digital) versus analog.

But here’s the thing: regardless of your empowerment today, it might be lessened or taken away tomorrow. You might be Humpty Dumpty – and all you can hope for is that either you’ll be put back together again or change your world-view and find liberation in dignified acceptance.

When you become an unempowered patient, you are no less human than before. You do, however, become dependent on others to impute empowerment onto your person and to confer onto you the full rights of dignity and care and technical expertise which any true civilization labors to bring forth into a world of chaos.

We’re not always empowered, regardless of what we do. There are times when we are varyingly unempowered. What happens when you become unempowered?

Who takes care of you? Who speaks for you? Who breaks their back to rescue your dignity from death?

Regardless of what words we use, the fact is: we ultimately depend on professionals who manifest their oaths everyday – from their care to their research findings. We need cultures of caring that lessen the need for linguistic work-arounds. The Empowered Healthcare Culture.

CITIZEN PATIENT

If you asked me what word I might prefer that we call patients, I’d say: citizen. Neither more nor less.

A citizen has rights and responsibilities. A healthcare culture that encourages citizens to exercise the former and assume the later, engenders a more optimal environment of communication and healing.

And as a citizen loses power – either by lack of resources or education or disease or despair – we are obligated to raise our voices. The provider becomes charged with empowerment. The Empowered Provider. (Laugh, but remember: when providers work with limited resources and loony policies, they become less empowered. The Unempowered Provider.)

But here’s an interesting example of the power of words: If I asked my providers to refer to me that way – citizen – I’m certain many would wince quizzically and maybe even become outright dismissive. Why would they do that? Because it sounds to some ears, well, kind of ridiculous. It’s totally out of place with what we’re used to hearing in the context of healthcare.

Institutional Habituation.

And therein lies a deep problem: if viewing me (the patient) as a citizen is the tiniest bit unsettling, that says something about the culture of healthcare.

Think about that: in a sane culture, citizen is a word that should never tempt dismissal.

So allow me to utter the ridiculous (‘cuz that’s what I do best):

The empowered patient is a citizen.

The semi-powered patient is a citizen.

The unempowered patient is a citizen.

We are not all patients…all the time.

We are all citizens…every moment, from birth to death, engaged or disengaged, educated or uneducated, electronic or analog, enlightened or unenlightened, empowered or unempowered.

@PhilBaumann –  @HealthIsSocial@RNchat

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