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
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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.

March 29, 2009

Obsession: Getting it Right When Getting it Wrong Hurts Too Much

Filed under: Notes from the Waiting Room — bartwindrum @ 12:11 pm
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INAUGURAL BLOG POST: This weekend I attended the Colorado Independent Publishers Association annual College—the annual brain dump, er, conference. Saturday’s closing session, by distant past President Kenn Amdahl, titled My Obsession Your Obsession, was brilliant. A melange/collage of thought and expression, Kenn spoke over/while playing guitar, resurrecting and interpreting 200 year old unearthed Irish folk songs while unfolding his theme: authors’ works emanate from their obsession; everyone has obsessions; connecting requires bridging obsessions.

Kenn brilliantly asserted that we authors (and I’ll include speakers) fail to communicate our essential mission because we haven’t figured out how to express our obsession. Worst case alternative is we prattle on about our books and work. That the obsession behind our presence is likely unconscious.

Thank you Kenn! I awoke at 4:30am; my subconscious, having been set to work, had produced:

My obsession is Getting it Right When Getting it Wrong Hurts Too Much.

That’s what lays behind and supports Notes from the Waiting Room: Managing a Loved One’s End of Life Hospitalization, The Option to Die in PEACE (Patient Ethical Alternative Care Elective), and How to Effectively Settle the Family Estate. My authorship, speaking, and reform activities.

Crucibles are valuable places, all the more so when we understand that they are. I describe terminal hospitalization as a crucible we slam into. Trouble with this crucible is that it’s among the roughest, and it’s damn near impossible to extract one’s patient-family once in it. It’s very hard to make right decisions there, because there’s so much to know, so little time, likely zero guidance, and virtually none of us has done the advance work (I do *not* mean advance planning, although that could, and ought, be a component).

So this is the obsession that animates my thinking, writing, speaking, and reform efforts. Getting it Right When Getting it Wrong Hurts Too Much.

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