Notes from the Waiting Room

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 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?


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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