Notes from the Waiting Room

April 17, 2009

Me, Bobby McFerrin, and Putting Our Heads Together

Filed under: Notes from the Waiting Room — bartwindrum @ 10:03 am

Some years ago I went to a concert by legendary Grammy award-winning jazz vocalist Bobby McFerrin. I had an aisle seat near the stage. Two-thirds through the show Bobby came down into the hall with his wireless mic, approached an audience member, and engaged in an improvisational duet, leading his mate in vocalizing whatever riff Bobby had begun singing. I watched rapt. Bobby turned and saw me. He changed riffs, approached, lowered, placed the mic between us, and we began our duet.

I listened to several repetitions of the riff before vocalizing it with him. Despite my musical background, (I played fusion drumkit into my mid-thirties) I had difficulty articulating the phrase. For Bobby, the master who articulates in rich and varied ways, had an effortless airstream. As I continued my effort to manage breath and increase articulation (i.e., mimmic Bobby) while trying to maintain up tempo phrasing, he sensitively began dumbing down his own articulation to meet me at (actually slightly above) my own level. With eyes closed and foreheads touching, we grooved, a musical master and a musical citizen in an extraordinary series of moments.

Bobby and I used a common language. After all, the syllables comprising his riff were basic. But his nuance, inflection, and enunciation equated to a very sophisticated conversation. Merely listening to Bobby appreciatively did not convey to me how sophisticated his musical conversation is; not until we locked in conversation did his exquisite command of musical language explode in my experience. I was surprised; after all, the silly syllables we uttered were basic vocal building blocks, i.e., words. Reflecting on it these years later, he made much more sophisticated meaning of the syllables than I was able to. He was the professional; I, the lay person.

Mapping this experience to my world now, I liken it to circumstances we find ourselves immersed in when a loved one is hospitalized. After much shock and bewilderment it gradually dawns on us that although we, the patient-family, and providers are speaking the same language, the meaning we make of common words and phrases must be different — what else could explain the disconnects, our breathless confusion and angst? We use the same simple words (care, advocate (noun) and advocate (verb), we suppose we have common meanings, yet our experience intrinsically tells us that patient-family meaning and provider meaning must be very different.

And it is.

I have long assessed that in order to advocate effectively when hospitalized we must first understand the root causes underlying ineffective behavior. I could, if I chose, start by offering you a list of things to do (and not to do). That’s both valuable and necessary. The real key however, is to go deep into the language we all use but don’t necessarily share. We do we expect care? If so, why? Are we naive? What is care, really?…do patient-families and providers consider care to be composed of the same elements? Do we all share a common understanding of advocate (noun) and advocate (verb)?

Mull this over and let me know your reflections. Let’s put our heads together. This time I’ll take McFerrin’s role.

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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.

April 3, 2009

Clearing the Forest, Seeing the Trees

Filed under: Notes from the Waiting Room — bartwindrum @ 5:04 am

Yesterday Terry Gross (Fresh Air on NPR radio stations) hosted Dr. Robert Martensen, a well-rounded ER doc and bioethicist who’s authored a book about reforming how we approach dying and death: A Life Worth Living. Having read an array of books on end-of-life matters including a number by providers, Dr. R’s comments and viewpoints are among the most accessible and relevant I have encountered by a provider (I’ve yet to read the book; I’ve reserved it).

The 39 minute show, The Ethical Way To Heal American Health Care, is at http://www.npr.org/templates/story/story.php?storyId=102638208. If you’re willing, I’d greatly appreciate your support by going to the page and clicking the “recommended” flag on each of my 3 consecutive posts—if you feel that they warrant that designation.

Dr. R actually said a few things that so sorely need articulating. I’m a proponent of straight talk, which is required for clear thinking. How refreshing to hear a doctor mention things like:

• we need ample lead time to parse the many issues around how we die in America
• the science behind technological interventions that work for middle aged patients does not exist in regards to elder patients
• the very phrase “life support” is troublesome: doctors don’t tell us that the goal of life support technologies is extended physiological functioning (i.e., docs use euphemistic language, the point I start from when discussing how to advocate for hospitalized loved ones)

And then an eye (well, ear) opener: hospitals are building freestanding “chronic intensive care unit” facilities to (ware)house the interminably dying (my phrase), and the government is supporting these through ongoing reimbursement for services provided there.

Hearing kind, wise, experienced and humane doctors is always a joy. A fear accompanies the hearing, however: I fear that people will experience mental palliation, believing that the docs will figure it all out for us. Of course nothing is further from the truth. Palliation at end of life in hospitals still occurs in hospitals. We have to request an initial consult and switch to this pathway, and we will receive treatment, and die, in a hospital bed in whatever unit we happen to be in. That’s how it plays now, and for X years into the future.

As we clear this metaphorical forest, we need to keep in mind the old saying: can’t see the forest for the trees. What role do you play in this metaphor?

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