Notes from the Waiting Room

April 10, 2009

Insidious Ubiquitous Obsequiousness (Treacherous Pervasive Subservience) (Don’t Be Nice)

Filed under: Notes from the Waiting Room — bartwindrum @ 9:19 am
Tags: , ,

Forward to this post A well-intentioned colleague forwarded a link to an article about patient advocacy. It was really more about accompaniment and befriending than advocacy, but that’s another story. Buried deep within the article was yet another admonition to be nice** when interacting with providers. Actually three admonitions in a row. I say “yet another” because these sorts of admonitions are always included.

**OK, the word “nice” wasn’t used, but functionally equivalent synonyms/antonyms were (be helpful, not antagonistic, ask in a friendly way…).

Um, like what, we’re running around nasty all the time? What’s really being communicated by the admonition (I say “admonition”, not suggestion or guidance)? Niceness is so basic. If we need an admonition to be nice, it’s probably because we have experienced, and are experiencing, enough egregious conditions to warrant feeling not-nice. But that context is is never stated. Absent that context, the message translates to: soft-pedal.

If ever a wrong message is sent, soft-pedaling while advocating medically is it. Now, this doesn’t mean you go ballistic. Of course that’s counter productive. So too, however, is this endlessly repeated notion to soft-pedal.

Language counts. We must clarify our thinking in order to advocate effectively, minimizing shock, harm, loss, and related “adverse outcomes”, as such results are referred to in medicine.

For whatever reason while scanning the article, as soon as I encountered the be nice admonitions my cork popped.

Context: for years, since the hospitalizations to authorship and speaking, I have embraced equanimity (“evenness of temper”). It’s not hard, it’s actually lovely. Fruitful. Useful. And, one must know when to bust it. As I wrote in Notes’ introduction, part of my goal was to include some emotional content throughout the book. By which I meant to impart a gut-level sense of what’s at stake. Because a book about how to advocate effectively emanates from failures to do so—failures that occur within a context of pain, exacerbated in an endless loop by both the context itself (the environment) and our failures within it. Until years later, after some number of hospitalizations, we finally figure out how to do it right.

’nuff said. What follows ripped forth from my fingers in the spur of the moment. Emotional content, informed by experience.

The Post

Awright.

I have spent since 2004 cultivating and manifesting a presence of equanimity regarding patient advocacy. For really, what my book Notes from the Waiting Room: Managing a Loved One’s End of Life Hospitalization is about is just that: patient advocacy. Only recently have I learned what I really did since my folks’ two terminal hospitalizations. What took 2 1/2 years to research and write, $15,000 to produce and manufacture, and countless hours and costs since to bring forth: I did a one-man lay person’s independent root cause analysis into systemic failures resulting in shock, harm, and adverse outcomes.

Put that in your scientific pipe and smoke it, “system.”

Enough is enough. I’m getting sick and tired of advocacy articles, (and now a new book by lay author #4 on managing hospitalization) admonishing us to be nice, “ask in a friendly way” “don’t be antagonistic”. In other words, obsequious.

“Oh please, don’t be mad at little me. Don’t get mad that I have to error check, keep a parallel personal chart, make up for massive ongoing deficiencies in communication, suffer the usurpation of common language selling us on a clinical meaning, twisted like a broken bone away from common understanding, of words like care and advocate (n) and advocate (v). For having to spend money hiring night help to monitor our loved one cos you don’t. For withholding EVERY vital thing we need to know to fill the gaps, while simultaneously bombarding us with meaningless brouhaha, or — when you institutionally try (thanks, at least and at last) to provide some guidance you do so at the wrong time in the wrong medium). Et-cet-er-a.

Give me a BREAK.

The real message ought to be: be businesslike. Matter-of-fact. Of *course* try not to piss people off. Just behave normally. But STOP these endless admonitions to be nice. Translation: Beg. Acquiesce. Place yourself beneath again, some more.

Be matter of fact. I as advocate have a JOB to do. A JOB the system TELLS me to do, INVITES me to do. But not why, and never how.

Until I happen to figure just a little bit of  it out after losing a week of irreplaceable opportunities to commune with my father, who I didn’t know was manifesting symptoms KNOWN to be associated with dying until *I* thought to google them and read the list on a hospice website.

I have experienced abandonment. The egregious aspect of it was that the treatment group (no care team in my lexicon) probably didn’t have a clue.

If the medical system was running correctly, and if those overworked and harried providers (and, let’s face it, the more or less monkey see monkey do staff) were doing things correctly, if all involved *cared* enough to put in place error-catching methods akin to the airline industry — and share the results so all could benefit instead of hiding hiding hiding — then maybe, just maybe, we all wouldn’t have anything to risk becoming antagonized about.

No love folks. No bended knee. Business, plain and simple, transacted matter-of-factly. This is the stuff advocacy is made of.

Mr. Equanimity will return tomorrow.

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2 Comments »

  1. Bart,

    I do hear you. I hear your call to arms — that NICE just doesn’t cut it. And I do agree that most of the time, nice just won’t make things happen the way you need to.

    Of course, you are referring to a word a reporter used in a news story. I might have chosen a different way to describe it. I suggest advocates (n) as they advocate (v) need to begin by commanding respect. That can be done nicely, but it’s more like being definite about what you expect. It’s NOT using questions “will you please…?” Rather,it’s stating “I need you to do X right away.”

    You are spot on with your commentary that the whole reason anyone even picks up a book about being a smart patient or a good advocate is because they have already encountered some hiccup in the system….

    Or as I tell the professionals, they have spent years completing an education, and that many more years acquiring experience to play their role well. But nobody EVER teaches patients how to be patients.

    Perhaps the first thing we should do is get rid of the title, “patients”? For surely, to get the best care, we should be too patient at all.

    Trisha Torrey
    Every Patient’s Advocate
    http://patients.about.com

    Comment by Trisha Torrey — April 10, 2009 @ 1:38 pm | Reply

  2. Trisha, yes, the twin meanings of “patient”. You’re right: too much patience leads to adverse outcomes. When I talk with providers and the conversation focuses on patient safety I say that the first complaint is an adverse outcome waiting to happen.

    Got a suggestion for an alternative to “patient”? (please don’t suggest “consumer” ;)

    Bart

    Comment by Bart Windrum — April 10, 2009 @ 10:34 pm | Reply


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