Tag Archives: end of life

Windrum’s Never Say Die Rap Premiers at Ignite Denver (video)

Bart Windrum | December 11, 2012 - 4:25 pm
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On Wednesday 24 October 2012 at Denver’s Oriental Theatre I joined 14 other speakers at Ignite Denver 12 in presenting 5 minute talks called “sparks.” These highly structured presentations require 20 slides (of one’s own making) that auto advance every 15 seconds (you can’t control them yourself; no running one slide for 23 seconds and a following slide for 7). Preparing for these are very challenging under any circumstance (such as a single presentation thread), so what did I choose to do? Include two major new works within an end-of-life primer:
• Windrum’s Never Say Die Rap, a 2 minute rap about end-of-life craziness
• an early version of Windrum’s Matrix of Dying Terms (it wound up being v2; a fuller albeit truncated explanation of v3, the theoretically final version, is here).

Even though I flubbed my own rap lyrics several times—I had to run the rap a bit up-tempo to time it to 8 slides—on the whole I think it plays well enough. Plus, people attend Ignites for several reasons: to feel the spark of new ideas, and to ride the anticipatory edge of wondering if a presenter will crash and burn; to experience how speakers function in this brief, pressure-cooker presentation format. So here it is…all in all, about the shortest, tightest presentation of complex end-of-life matters possible. And…rap lyrics below.

(Inside joke note: my reference at 4:15 to end-of-life-landings GPS coordinates and a final geocache location that elicited some unanticipated laughter riffed off of an earlier presentation that night on Geocaching.)

For more Bart Windrum videos click here.

Windrum’s Never Say Die Rap

Want to die at peace got to die in peace
All of one piece say “pretty please”
Want to go in grace with a neutral face
We’re done this race—no gotta stay in place

Beyond ready to depart
Jump jack your bones and shock your heart
When you’re pickin pickin at the air
No bro ma’am you ain’t goin nowhere

There is an app for that
Windrum’s Never Say Die Rap

Independent thinker, no one’s rube
Shove in 1 2 3 4 5 tubes
With CDiff MRSA gurgle gurgle
And all I wanna do is cuddle and snuggle

There’s no app for that
Windrum’s Never Say Die Rap

And: in the annals of stupidity
death panels twist our talkin free
Can’t touch the sky, can’t see or be seen
Ain’t livin ain’t dyin don’t mean to be mean
When death comes knockin my clock tic tockin
Hey everybody: deus ex machina

Rap about that
Windrum’s Never Say Die Rap

Now it ain’t just medicine in our way
If you don’t talk, you don’t get no say
Call 911 when it’s time to pass
blockin our own path pain in our own ass

Take a number for that
Windrum’s Never Say Die Rap

Steve Price RN says dyin is dyin
his songs are cool; he ain’t lyin
Chart your glidepath while there’s time
to die at peace with minimal cryin
Study up, make some sense
of 21st century impediments
Time to grow up before we get old
There’s more to dyin than we’ve been told
Wishing won’t help us turn the page
So sixteen new terms to engage

I have a matrix for that
Windrum’s Never Say Die Rap
Windrum’s Never Say Die Rap

© 2012 Bart Windrum, Axiom Action LLC, and Bartholomewsic
Danger Zone loop by DJ Buzzword. Additional loop processing and orchestration by Bartholemewsic.
Hear also Awake, Steve Price, RN

Bart Windrum is a citizen end-of-life reform advocate.

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Room With A Grim View

Bart Windrum | July 15, 2012 - 11:05 am
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I try to stay upbeat about end of life stuff because (a) I’ve figured out a lot about it, untangling and reweaving what, in my best assessment, we need to know and act on to maximize our chances of dying in peace, and (b) I believe that when my fellow citizens know also, they’ll feel and in fact be empowered to enact it for themselves or loved ones. Much of this is around internals—what’ in our heads and hearts—because that of course is the groundwork for our actions.

Martin Baynes’ article at HealthAffairs, “A Room With A Grim View: The ‘Ambient Despair’ That Marks Life In Assisted Living” is a crucial read. You may end up as deflated as I felt after reading, but read it anyway. It’s too important not to. And then ponder, if you’re young enough, what kind of living arrangement may be in your future.

I’m no lawyer but I’d like to see some kind of smaller shared living on a co-op scale, where the necessarily temporary residents maintain more control than in corporate environments with profit imperatives and managers who answer to—whoever they answer to—and whose interests lay elsewhere, no matter what bromides may be offered about mission, etc.

I’ll out with it: I don’t understand societal fascination for and trumpeting of longer and longer longevity. Science loves it; everyone (it seems) crows for it. Me? If I ever end up living under some corporate entity’s control I hope I enter with a pill or “the cocktail” squirreled away. I believe we each have a right to choose when we die. I distinguish between suicide (ending a viable life) and self-directed peaceful dying when elderly. In the same way I don’t accept the medical definition of “care” (“whatever occurs in a hospital or clinical setting”), I don’t accept medicine’s extremely short-term definition of terminality (a range between “we diagnose you as uncurable and don’t expect you to live longer than six months” and the 4–7 days of bodily active dying).

To be clear, as an end of life change agent who presents to various audiences, I don’t trumpet these personal views. That’s not what I’m there to offer, and in any case there’s no time to get there; what few minutes or several hours allotted go completely to core practicalities about how to advocate effectively and accomplish peaceful dying within broadly acceptable and legal bounds.

Maybe there’s a silver lining to our dwindling economic clouds: if familial generations return to cohabitation, to living together in a single home, maybe we’ll more easily, naturally get what most of us say we want: to die there, in peace.

Bart Windrum is a citizen end-of-life reform advocate.

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Organ Donation and the State of Death

Bart Windrum | March 25, 2012 - 9:47 am
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This is a fascinating examination of issues around what it is to be dead, in the context of organ donation and harvesting. Terry Gross’s Fresh Air single-show, successive interviews with author Dick Teresi (The Undead) and transplant surgeon Richard Freeman, MD. Quicker to read but can be listened to. Do it.

Bart Windrum is a citizen end-of-life reform advocate.

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RIP Dr. Peter Goodwin, author of Oregon’s Death With Dignity Act

Bart Windrum | March 15, 2012 - 5:22 pm
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On March 11 2012 Dr. Peter Goodwin ended his life under the law he helped create—the Oregon Death With Dignity Act. A short video interview with him is available here.

Self-directed dying, for those diagnosed by several physicians as terminal with 6 months or less to live, offers a peaceful demise to those who are dying from debilitating diseases that guarantee a languished, anguished end if taken to their bitter end. Dr. Goodwin did not go without regrets, but he did go peacefully—an outcome virtually all of us say we want, very few of us achieve, and fewer of us know how to increase the likelihood of attaining no matter where we live. This because we’re all too scared, or cowed, to talk, to think, to choose. So we wait. And wait…beyond the several late life hospitalizations and debilitations likely in store, until events grab us like the existential tornados I’ve experienced them to be during the hospitalized demises of each of my parents, despite advance directives suggesting they’d have rather experienced peace at their life’s close. Extracting oneself or a loved one from a late-life terminal medical crucible is difficult at best; it was impossible for my patient-family. The crucible is particularly awful when the patient-family is the subject of medical error and other systemic maltreatment.

Euphemisms abound for self-directed dying. The American right uses “death panels”. The press uses “physician assisted suicide” (although that third word is inaccurate once one is diagnosed as terminal). Doctors (be they curative, palliative, or hospice docs) who provide palliative sedation in sufficient doses to end life use the cover of St. Thomas Acquinas’s Principle of Double Effect, which says that dying is an acceptable outcome if the doctor’s primary intent is to relieve suffering. Dr. Tom Preston uses “patient-directed dying” in his book of the same name. I use “self-directed dying” because that places the ownership on how we close our lives where it rightfully belongs: in each our own hands.

That’s as it should be. And it’s a truly brave act to hold that choice close.

Bart Windrum is a citizen end-of-life reform advocate.

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The Fourth and Fifth End of Life Trajectories

Bart Windrum | December 29, 2011 - 1:40 am
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In 2003 the renowned palliative nurse JoAnn Lynne published a set of 3 graphs. They’re called End of Life Trajectories; you can see them here. They depict how 3 of the primary causes of death in America unfold over time; the Y (up) axis is vitality and the X (across) axis is some amount of time. Cancer, organ failure (typically heart disease) and cognitive failure each project a unique slope, as a line formed by charted data is called.

This past fall it suddenly occurred to me that the 3-graph set is antiquated. I figured that it should be four, and my colleague Jennifer Ballentine (a towering figure in Colorado’s palliative care community) offered a fifth.

So I’ve added a fourth graph for medical error. While not all medical error results in injury or death, two widely recognized studies less than a decade apart identified medical error as among the leading causes of death in America—and at an accelerating rate. The first study, the Institute of Medicine’s To Err is Human: Building a Safer Health Care System, concluded in 1999 that about 98,000 annual deaths result from medical error. The second study, HealthGrades’ Patient Safety in American Hospitals showed, using Medicare data, that about 195,000 annual deaths result from medical error.

Let’s put this in perspective: at these numbers, depending on how you source or crunch the data, medical error is somewhere in the top five causes of death nationally, possibly even the second leading cause. One day, months after learning all this, the thought occurred to me that this cause of death deserved to be graphed and included with the initial three. I’ve done that and include the figure in my presentations about opting to die in peace. My graph’s slope has been agreed with by a highly regarded palliative care physician, and I footnote the figure with the previous disclaimer about how not all errors result in harm, plus that I’m the source and my “data” is anecdotal (although perhaps a better word might be “interpretive”). Actually, the figure works best when superimposed onto or juxtaposed with the three “legacy” end of life graphs since, almost by definition, medical error is likely to ensue during a hospitalization, which is most likely to ensue due to a cancer, organ failure, or cognitive decline event. Each of my trajectory renditions refers to the last twenty or so years of life; the medical error slope’s long tail indicates some years of life that are lost due to the error.

Sharing this with Jennifer she let loose with: you should graph PVS: persistent vegetative state. Major aha and eye popping moment, because a person in a PVS never dies. The tail of a PVS EOL graph extends forever, until the “plug is pulled” otherwise death never occurs, it remains “out there” somewhere (I say death; perhaps I mean to say “closure”).

If you’ve already seen graphs depicting medical error as a primary cause of death that we as lay persons, who will die, ought to account for and reckon with, and depicting PVS as an endless end-stage, in the context of making end of life choices, let me know. I haven’t. These are not the sort of visuals I would expect medicine to present. They bluntly present two very real end-stage conditions that those who really want to die in peace would be well advised to consider.

Bart Windrum is a citizen end-of-life reform advocate.

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Redefining the End-of-Life Standard of Care

Bart Windrum | March 14, 2011 - 10:37 pm
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.
Compassion & Choices President Barbara Coombs Lee made a comment during an end-of-life (EOL) panel discussion that resonated fully: to help more people die in peace we need to “redefine the standard of care at end of life.”

Think about this. Redefine the standard of care at end of life.

This compact statement is everything required to support us all in achieving the peaceful demise virtually all of us say we want, yet barely an inverse number achieve. It’s so simple, and so profound.

Barbara’s phrase takes the act of redefining language—my launching point when conceiving and discussing how to advocate when hospitalized, and how to achieve a peaceful demise—to a fully dimensional place. Because language, no matter it’s power, is less dimensional than action. Language, as powerful as it is in framing our expectations and thoughts, merely informs action. Action in medicine equals treatment. Treatment is fully dimensional. We act on language; we experience treatment. We die, and survivors live, with the results of treatment choices we make, or fail to make.

The advent of life support technologies in the 1960s and development of a home for them (the intensive care unit, or ICU) has its clinically logical extension in the chronic ICU facility, with floors of beds for dozens or hundreds of comatose bodies maintained on life support).

Applying this technology endlessly, some would say mindlessly, at the end of life has evolved into the standard of care. But by whose definition?

The irony of American culture is that we seem to pay homage to the notion of individuality yet in many matters, especially how we exit this planet, we traipse along like lemmings. Medicine has defined the EOL standard of care. By and large citizens have acquiesced to medicine’s definition, even with survivors from family after family recoiling from their experiences.

My mantra bears repeating: we actually have to do something in order to increase the likelihood of dying in peace. I begin to articulate what it is we must do here and here.

Part of my language assessment is that our experience of treatment does not feel like or equate to care. Yet providers believe that the treatment they offer equals care. Now, we’ll never strip the letters ‘care’ from the healthcare conversation, for evident reason. But we can examine and clarify obfuscating language so as not to lose the first week of a terminal (or any) hospitalization to bewilderment over what is not happening and what is happening.

What constitutes the standard of care has been invisible, like the air in a flotation device. The device is nothing without the air, yet we never think or speak in terms of that air, only the floaty. But redefining the standard of care is something we can act on and influence. Because that’s about agreement, and consent or refusal to consent. That’s our personal, social, and legal right. The right to informed consent at end of life is being slowly codified into law. But that’s all about the provider side. What about the citizen side?

THE missing voice from panel after panel about EOL matters is ours: citizens’. By “citizens” I mean informed citizens; patient-family members who’ve been through the forest and have mapped it. Articulate people who’ve transformed from harmed persons into patient advocates or activists. We have insightful comments to add because we have deeply parsed the kinds of experiences you really do not want your patient-family to have.

We’re out here. Some, like me, have been recognized by the Institute of Healthcare Improvement (IHI), a well-respected non-profit responsible for significant advances inpatient safety. Redefining the standard of care requires more than panels of medical and policy experts with no informed citizen representation.

Patient advocates bring a different voice to the conversation. I suspect our voice is regarded as scary by panel hosts (if not many panelists) because it necessarily comes from gut level. This implies real feeling, but does not imply craziness. Ours is the voice of passionate clarification, not the dispassionate voice of the clinic or the legislature.

The simple truth is this: including the informed citizens’ voice in every panel discussion is the first step towards redefining the end-of-life standard of care.

Bart Windrum is a citizen end-of-life reform advocate.

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Windrum’s Way Out Politiku

Bart Windrum | September 10, 2009 - 4:12 pm
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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.” 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.

Bart Windrum is a citizen end-of-life reform advocate.

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Obsession: Getting it Right When Getting it Wrong Hurts Too Much

Bart Windrum | March 29, 2009 - 12:29 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.

Bart Windrum is a citizen end-of-life reform advocate.

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