December 2010: Preface to this post, 1 1/2 years later What follows is, in part, a snide and angry post. It’s raw. In a Be Nice world, it’s risky of me to post it and keep it posted. The sorts of occurrences that give rise to patient advocacy are fueled at their outset by anger. That’s the gift those who do this work offer: making something good out of something bad, something wrong. The trick is in the channeling. We’re good at it; when we show up as authors and speakers we channel. We manifest our equanimity. Meanwhile, use this blog entry’s tenor as an indicator of what we feel when things that need not go wrong go deeply, irrevocably wrong.
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.
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 INVITES me to do, TELLS 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.