Notes from the Waiting Room

December 20, 2010

Redirecting You to

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 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 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 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
Be—you know?
Oh, no no
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.

Blog at