Notes from the Waiting Room

September 26, 2014

A Final Redirection

Filed under: Notes from the Waiting Room — bartwindrum @ 7:46 am

I’ve retired HospitalPatientAdvocate.com and reverted to http://www.AxiomAction.com. There you’ll see I’ve rebranded my end of life reform work under my own name. At this writing, the work I began in 2004–5 which resulted in the book, Notes from the Waiting Room: Managing a Loved One’s (End of Life) Hospitalization, has grown into a presentation program, Overcoming the 7 Deadly Obstacles to Dying in Peace. In the intervening years since beginning this WordPress blog, leading up to the 7 Obstacles program, I’ve given a TEDx talk; developed a thanatological work (Windrum’s Matrix of Dying Terms™); scripted, orchestrated and perform an end of life rap (Never Say Die Rap); been published in the Journal of Participatory Medicine.

To stay the most up to date on my work, sign up for occasional email announcements on any site page at http://www.AxiomAction.com. When you do you’ll be immediately directed to a page and a free downloadable presenting the first step that’s required of us in order to better our performance as medical proxies and to increase our likelihood of dying in peace.

Bart Windrum

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December 20, 2010

Redirecting You to www.HospitalPatientAdvocate.com/Blog

Filed under: Notes from the Waiting Room — bartwindrum @ 7:54 pm

To readers of Paul Levy’s wonderful blog Running A Hospital: Thank you for linking here from Paul’s kind recommendation of Notes from the Waiting Room: Managing a Loved One’s End of Life Hospitalization. Notes is 2/3 about how to advocate during any hospitalization and 1/3 about revisioning end of life to minimize shock, harm, and grief, and to maximize the likelihood of a peaceful demise. I’m both author and independent publisher. As publisher, I welcome purchasers at HospitalPatientAdvocate.com for direct fulfillment of the book. Let me know if you’d like your copy inscribed.

As I write this I’m building out the new website; it incorporates a blog. This is the last post I’m making on this independently hosted blog. I’ve copied all previous blog posts to the new blogsite.

Hospital Patient Advocate replaces AxiomAction.com. Axiom Action is my umbrella organization. Its name means to seek what is true and then act on it.

Besides being a better search phrase than Axiom Action, Hospital Patient Advocate clearly communicates my focus on helping patient-families understand that they’ve a need to advocate, and to obtain some guidance about how to approach and actually do it.

In addition to Hospital Patient Advocate, we’ve split HarvestTheBounty.com off of Axiom Action also. Harvest is devoted to my wife Deborah’s work and her stellar book, Harvest the Bounty of Your Career—an artistic, must-read must-see that uses a tree metaphor for examining, evaluating and elevating one’s roots, branches, fruits, and seeds whenever one moves through different life phases.

See you over at the new sites.

December 13, 2010

Nanny Nay Nay

Filed under: Notes from the Waiting Room — bartwindrum @ 6:38 pm

I’m driving through Wyoming, and the trip has gotten weird.

Four months ago my soon-to-be 21-year-old daughter’s cute-Ute second-generation Rav4 got rear-ended and totaled on I-70 west of Denver. Now I’m headed back to Colorado’s Front Range, this time in a larger, third-gen Rav4. The market’s better for buyers in the Salt Lake corridor, Utah’s Front Range equivalent. As I did three years prior, I flew over, hit the dealer by noon and the road an hour later. Depending upon the route—the longer, more scenic Colorado route, affording an apre-dinner swim/soak at Glenwood Hot Springs, or the shorter route across southern Wyoming—I arrive home either 15 or 18 hours later, having inaugurated the vehicle. After taking the Rav up to 95mph, I set the cruise control at 82.

Southern Wyoming means I-80, a trucker’s road. The drive has a unique rhythm: approach a tractor-trailer rig from behind, set blinker and pass left, reset blinker, slide right, repeat. Sometimes I pass strings of trucks coupled by their slipstreams. Invariably, they glimmer in all the headlights, as if their every surface has been polished.

I brought a few CDs along for the drive, including a 1994 Windham Hill sampler. The sampler contains 46 song excerpts from their catalog plus one or two full-length songs. Without exception, all I know of each artist and song is its CD snippet. The CD has its own overall shape, making it an “album” all its own.

Track 27 captures me; it’s mesmerizing. An instrumental augmented by a 16 bar vocalization in a language I cannot understand—if it’s a language at all; for all I know it’s simply a syllabled melody. As the excerpt fades, I discern it shift into what I’ve since learned is the entire balance of the tune; the vocalization appears only during this first minute.

Poking the reverse scan button, it played again. Again I poked reverse scan, this time attempting to force the playback into proper timing, as if the ditty were a perfectly timed 24 bar loop. I’m interested in about 54 seconds of this 60 section excerpt. I played fusion drumset for twenty years, and it didn’t take long for me to find the correct timing: on the 3rd 16th-note upbeat (counted one-ee-and-uh two-ee-and-uh-three-ee-and-UH) I’d depress the button with percussive physicality, the wrist-arm followthrough much like when crashing a cymbal—and the loop played in perfect tempo.

For hours, around dozens of trucks, for hundreds of miles.

Now, I can’t leave things alone; I must make meaning of them. Since my parents died and my entry into patient advocacy, I often find my thoughts enmeshed in things related to all this.  I tried to decipher the vocalization. Here’s what I made of it:

Be Nanny
Nanny nay-nay
Nannay
Be—you know?
Nanny
Oh, no no
Nannay,
Be—you know?

I’m sure that this is not what’s enunciated. Since writing Notes from the Waiting Room: Managing a Loved One’s (End of Life) Hospitalization it takes very little for me to slip into ruminations about my parents’ demises and my subsequent patient-family advocacy work (a result of that existential harm I talk about). When zoning on cross-country drives this mindset takes over. (I have another metaphor for the mindset, but that’s an entirely different story.)

So what meaning do I make of my meaning? A continuum. A feminine continuum.

Be Nanny. My grandma. My mom, grandma to my daughter. My wife, grandma-to-be someday. My daughter, grandma when I’m long gone.

Nanny Nay Nay. Our role as patient advocates concerned with minimizing and mitigating risks to our hospitalized loved ones. Nanny, no matter our gender. Nay Nay; refusing to accept systemic shortcuts and shortcomings.

Oh, no no. Exactly what we think and feel time and again on the spur of every untoward moment.

Nannay. A hurt one’s lamenting, emphatic call for our involvement

Be—you know? We must be this role.

And so I kept at the repeat button, on the upmost upbeat, at full volume, for hours, and hundreds of miles. Anticipating the patient activist leadership summit at IHI.

The track is Sobre o Mar (Upon the Sea), from Paradise Station by Brazilian guitarist Torcuato Mariano, audio here . For those in the musical know and familiar with the coda to the Pat Methey Group’s Phase Dance (1978),  Torcuato seems to be in conversation. PMG’s overlay with my mental musings around patient advocacy is yet another, more private story.

December 11, 2010

IHI Patient Activist Conference Experiences

Filed under: Notes from the Waiting Room — bartwindrum @ 6:29 pm

IHI/Institute of Healthcare Improvement invested a lot of money to host 50 or so “patient activists” at the recent Orlando conference. Where we all go from here is yet to unfold. I’m thinking it’d be nice—and useful— to assemble a sense of our experiences; what we have received from the conference *program*. Specifically. Based on our own conference schedules. In the prior two posts I’ve described the two sessions that had the most impact on me. How about you, other PAs? If all of us comment on this thread we’ll have 50 synopses of our own conference tracks, or their high points. Then I can direct Maureen, Jim, Paul, Jenna, and anyone else brought to my attention to this post for our cumulative report of our conference experience. “Letter rip.”

Yay! Communication Algorithms!

Filed under: Notes from the Waiting Room — bartwindrum @ 10:40 am

When I published Notes from the Waiting Room: Managing a Loved One’s End of Life Hospitalization in 2008 I included a chapter with proposals for medical system reform. Among them was something I called Communication Algorithms:

Physician-scientists are trained in and use “decision trees” to arrive at diagnoses. The series of if/else questions is referred to as a diagnostic algorithm, a process or set of rules to follow when solving medical problems. Although the best doctors are adept at thinking outside the decision tree to arrive at diagnoses for particularly challenging health problems, the model offers an effective framework for starting many diagnoses.

Accurate communications are as important as accurate diagnoses. All doctors ought to be trained in communication algorithms appropriate to their specialties and be required to prove their competence for licensure.

Communication algorithms should include a range of conversations every specialist can reasonably be expected to engage in based on the nature of their specialty. It should be acknowledged that effective, proactive communication is rightfully the responsibility of the physician (rather than the patient-family), by virtue of their repetitive experience. Every physician must be capable of engaging in a range of complete conversations that arise as part of their practice.

Yahoo! They’re here—at least in part. At IHI/Institute for Healthcare Improvement’s annual conference I took part in a role play (referred to below) designed to teach providers how to conduct The Talk (when a hospitalized loved one is known to be dying). The session was conducted by David E. Weissman, MD and Lyn Ceronsky, DNP, GNP. David and Lyn coached accomplished surgeons and doctors through a multistep process designed to teach the cognitive, emotional, and situational awareness required to initiate, sustain, and complete The Talk. This session was so engaging that I failed during it to realize that what I was experiencing was exactly what I’d asked for in Notes: a communication algorithm.

Now: if more providers replicate David’s and Lyn’s work throughout the range of conversations germane to their specialties, half or more of the patient advocacy battle will be won or moot.

December 8, 2010

When Trees Walk

Filed under: Notes from the Waiting Room — bartwindrum @ 9:29 am

I’m attending my first IHI/Institute for Healthcare Improvement conference. Along with 49 other “patient activists” I’ve been invited to attend as a guest of IHI in its inaugural outreach to citizens who have felt compelled to act to help all of us overcome medical error, safety lapses, and provider-centered treatment (distinct from patient-centered care). In the run-up I learned that IHI is the heavyweight in the healthcare improvement arena, and the scale of this conference is immense. 5800 attendees (seats occupied, breakfasts and lunches served, bodies bussed hither and yon). Another 15,000 video linking for the keynotes.

In my own book and talks I say that “providers can’t see the forest because they themselves are trees.” Meaning, rooted; stuck in place. That it takes we citizens, who have traversed the medical forest and come out the other side, to map it for those whose turn is next.

What happens when the trees start walking?

The obvious answer is “some reconfiguration.”

This conference is filled with a provider mix of doctors, nurses, admins and others interested in and devoted to positive systemic change. One midwestern community hospital system built a new facility, after 3 years’ design time, that’s entirely patient-centric. They redesigned their concept and implementation of much of what transpires in a hospital with the express goal of making patient-family experiences there quick, easy, safe, and humane. The CEO and architects made the presentation.

I took part in an extended role-play exercise in which real doctors played the part of a doctor as they tried to learn how to initiate, sustain, and successfully complete The Talk (the conversation that ensues when a loved one is known to be dying). Never mind that I believe that docs are actually taking on more than their fair share in this pursuit; that it’s each of our responsibility to initiate The Talk, and years before our demise. Providers will do this because they must; it’s their daily environment. Even knowing how hard beginning The Talk is (I failed with my own father—and it was my failure, not his), watching long-time surgeons and ED docs struggle to get it right gave me new appreciation for how much cognitive, emotional, and language skill is required for a most sensitive series of moments.

Because even this provider population represents a fraction of providers, perhaps walking is not the term that best describes this activity on a system-wide scale at this time. Perhaps “writhing” is a better descriptor of the system as a whole. But there’s no doubt: a growing number of medical personnel are aware of, focusing on, and changing their behavior toward patient-family needs. The whole system won’t change anytime soon, and I remain prepared and ready to advocate for myself or my hospitalized loved one in any setting. A new aspect has arisen: now I must first assess to what degree providers I’m engaging are patient/safety centric. One might suggest that such centricity would evidence itself.

A real-time reconfiguring forest. Interesting place to walk.

September 10, 2009

Windrum’s Way Out Politiku

Filed under: Notes from the Waiting Room — bartwindrum @ 9:48 am
Tags: , , ,

In yesterday afternoon’s HARO (www.HelpAReporterOut) list I learned of Susanna Speier’s Huffington Post column, Politiku. Politikus are hiku’s (3-line Japanese poems or stanzas with a 5-syllable, 7-syllable, 5-syllable structure) focusing on all things political. Speier put out a HARO call for health care reform politikus. Right up my alley (I write poetry in addition to books).

I purposefully didn’t want to over-edit, preferring to go with the flow. These days my flow muses about the true time and nature of “death panels”—a topic on which I am soon to shop a 1700-word article. The hiku below is based on my core thoughts, expressed in a way so as not to publish them in a technical sense, which would preclude the article from consideration as an original work.

Windrum’s Way Out Politiku

Death panels: self-serve;
Must be so else goose is cooked.
The road *will* be crossed.

Chickening out? Not
an option. Go in time or
machines run you down.

Die in peace we say
and avoid that at all costs
zombies ’til the end.

Do your own work now.
Doctor, don’t take this on too.
Road chicken? Fly high.

May 23, 2009

Mundane Contemplation

Filed under: Notes from the Waiting Room — bartwindrum @ 10:11 am

Coupla nights ago I attended an evening hosted by the Boulder-based Men’s Leadership Alliance at the Boulder Shambala Center. Topic: dying and death. Attended by a mixed-gender group comprised of 20-somethings to 70-somethings. This was an interesting mix of people! I was curious as to what might transpire (I’m familiar with, tho not schooled in, Buddhist practice around death and the value of contemplative being with the dying—including one’s own future dying). Here was a secular (albeit deeply soul-searching) organization hosting a night on death at a contemplative center. What would we accomplish in 3 hours?

When I co-edited the Mens Council Journal: Stories of Male Experience (almost 20 years ago; favorite issue, The Underworld)—part of a second wave of caretakers of this soulful publication founded by those who would subsequently form MLA—I was aware of the role I played: middle-class guy exploring deep men’s issues. All involved, I think, were middle class guys, though many of us did not subscribe to mainstream social norms. I however, did not engage in contemplative activities, nor did I feel drawn to or engage in ritual-based retreats intrinsic to Mens Work. Nor do I now, although I understand and value ritual’s role in human experience (to tenderize).

Buddhism offers profound guidance around dying and death. It, apparently alone among religious/spiritual pursuits, delves into end-of-life matters face-on as a matter of practice. Having also attended a Naropa Institute conference on contemplative caregiving, I think I can accurately assess that current Buddhist practice around death/dying limits itself to personal contemplation even when applied to assisting patient-families at end of life.

My work focuses on practical matters, and I remain interested in joining with contemplative Buddhists in offering the public a more comprehensive training for preparing for dying and death. Because that preparation must happen as part of our busy, everyday lives in the mundane world. How do we manifest the resolve to die peacefully (like 90% of us say we want)? How to we get to the place where we can quietly contemplate if we are not already Buddhists, or innately drawn to that path? What must we know and understand about what occurs by default—medically, emotionally, experientially—aspects that serve to function as a fuel for subsequent contemplation?

My work leads us through contemplations of the mundane, the worldly—the stuff on the other end of a 911 call. Once non-Buddhists have truly contemplated those realities (distinct from casually commenting upon them), we will have arrived at a place of opening to deeper contemplation, contemplation that re-teaches us how to be with dying, and with the dying as their lives close. To actually manifest the resolve to die in peace. The fork toward the end of life’s road is placed well in advance of that end.

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.

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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