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How Doctors Die: An ICU Nurse Responds

Note by Michael Dowd: A week ago a colleague sent me a link to an obscure blog that had “gone viral”:

“How Doctors Die — It’s Not Like the Rest of Us, But It Should Be"

Tremendously moved, I decided to do my part in spreading this sobering news and vital perspective. One of those who received my email was a young nurse, newly certified for working in the Intensive Care Unit. Below is her response (slightly modified for confidentiality).

Her story brought me to tears of joy and gratitude when I first read it. May there be ever more nurses with the training, the courage, and above all the heart exemplified by this unheralded young hero.

_____

Response by a young “Intensive Care Unit (ICU)” nurse:

Thank you so much for this timely article. Only two months ago I participated in an "End of Life and Palliative Care in the ICU" class, where I was genuinely moved/tormented by the suffering my fellow nurses and I are surrounded with in the ICU.

A peaceful, gentle death is so valuable — and so rare.

I recently cared for a young adult cancer patient at the end of her life.  She came to the ICU after having a bone marrow transplant to deal with the "pre-leukemia" she had developed, owing to an aggressive chemo regimen initiated several years earlier for her breast cancer.

By now, her whole body had deteriorated to such an extent that she required a mask that forced air into her lungs in order to oxygenate.  She spent two weeks in our hospital’s ICU, with her lungs progressively worsening.

All the nurses knew she was not going to leave our unit. But her oncologist kept telling her to “fight it out!”

Finally, and this was on my shift, with her parents at her side, “Gloria” (the name I'll use) finally said that she just wanted the pain to go away.

Suddenly, everything changed.

I had just brought into her room her evening meds — literally thousands of dollars worth of antibiotics and anti-rejection medications.  None of it mattered anymore.

I took down all the unnecessary tubing, started a morphine drip and administered Glycopyrrolate (which dries secretions and softens the "death rattle").

This felt massive to me. I remember this mix of emotions: sadness, relief, and an overwhelming sense that I was a part of something huge.  I still cannot wrap my head around it.

I was able to help transition one profoundly suffering human being from a regimen of “Come on! Power through! Endure, endure, endure!” to, “It’s okay, Gloria. You fought so, so hard. Now close your eyes, let your pain fade, and rest.”

It was beautiful.

Gloria died the following day — not on my shift, but I felt so happy that I had been able to share the transition with her and her parents.

To think of everything we had put this woman through in hopes of an inaccessible cure is just ... sickening.

Medicine has gotten to the point where we've gone as far and as invasive as we can go. I wish people — both we professionals and the public at large — would begin to prioritize a dignified death above all.

Family members need to know that there is far more beauty in spending quality time (rather than simply a quantity of time in the hospital) with their unalterably disabled and ultimately incurable loved ones.

Sadly, when family members must make medical decisions, too often those decisions are influenced by a subconscious need to palliate our own emotional suffering. As well, an irrational fear that we will otherwise be guilty (or at least will feel guilty) spurs good people to say “yes” to absolutely every intervention that forestalls death.

Though I wish everyone could die at home surrounded by love and comfort, I know it is the nature of those battling cancer to often push themselves far past their ability to survive the journey home.

It is my duty to honor this incredible fight and allow them to pass peacefully, without pain — and to let them know that accepting death is the greatest victory.  

~ by an ICU nurse, posted by...
Comments (2)

Immortality Projects in the Internet Era: The Rise of Volunteerism, the Demise of Consumerism, and the Democratization of Cultural Progress

by Connie Barlow

A year or so ago a colleague suggested that I submit an article to an excellent magazine to which he regularly contributes. I responded along the lines of,

“Why would I want to do that?!  The magazine has no free online presence. At most, my article would be read by a few thousand subscribers and then utterly lost to posterity. Meanwhile, the trees cut to produce the paper would add to my ecological footprint. No thanks!”

As the author of two books and two anthologies ushered into print by respectable publishers over the course of a decade (1991 - 2001), I have been responding in a similar vein when asked whether I plan to write another book:

“Why would I want to do that?!  At most my book would be read by a few tens of thousands of individuals over perhaps a decade; I’m not famous enough for a publisher to produce an audio version; and I wouldn’t be allowed to keep updating the content.  Besides, the publishing industry has crashed; there is no money anymore for my class of writer, so I might as well keep creating, posting online, and updating my own stuff for free.”

Ten years ago, all I could do on my computer was type, save, and print a text document. That was a marvel, of course, compared to the IBM Selectric typewriter on which I composed my first book (published in 1984). Today I still type in text, but now I convert that text into html and upload it into one of my websites, or I convert it to pdf and link it into the Internet. Or I might post the text as a blog, as I plan to do here.

I enjoy creating audio, too, using the recording, editing, and music-making software that comes with my Apple computer. I convert the final product to an mp3 file and upload it onto a commercial podcasting site, for which I pay a small monthly fee.

Best of all is the opportunity to create and publish in video format. Not only is video the richest, most emotionally compelling and artistic mode for communication, but the final product enters an arena that is as close to immortal as anything humans have yet devised — and it costs me nothing, thanks to YouTube.

YouTube as Today’s Best Bet for Immortality

I’m not sure whether Google is God, but I darn well know that YouTube is my ticket to eternity.  And Google is godly enough to have provisioned YouTube with the best indexing-and-finding system yet imaginable.

If a video truly has merit, if it offers something unique, and if I have done a satisfactory job of embellishing it with a text description and keyword tags, then ultimately it will be found; it will be appreciated. That may happen long after I am dead. But it won’t moulder in some descendant’s basement and be tossed into the trash during a move. It won’t stand idle on library shelves, where my four books now repose. (And I’m not convinced there will still be bricks-and-mortar libraries in a hundred years.)

Note: Just this moment I discovered a website that lists all the libraries in the world where each of my books resides, in order of distance from anywhere in the world. My 1997 book, Green Space Green Time: The Way of Science stands in 698 libraries, the furthest being Botswana.

As to most digital forms of legacy projects, long life and accessibility is, at present, far from assured. Consider: If my husband and I were to die today, within a year or two our websites would go down, for lack of payment to the server and for nonrenewal of domain names. Within a few months, all three of our podcast channels would vanish, archives and all — again, for lack of payment.

YouTube not only freely accepts all my videos. It requires zero upkeep on my part.  At this moment, it is by far the best bet for immortality.

Google Scholar is also as close to immortal as anything gets. But it is decidedly undemocratic. It preserves and makes available only scholarly texts, and then, if there is a copyright issue, only in bits and pieces. Portions of two of my four books are preserved on Google Scholar.

Bottomline: if you haven’t attracted the attention of a real publisher, Google Scholar is unlikely to be interested in your immortality project — however dear it may be to you.

Immortality Projects to the Rescue

Ernest Becker, in his Pulitzer Prize-winning The Denial of Death (1973), popularized the notion of “immortality projects” — portraying them as the offspring of our human awareness of death and our consequent attempts to overcome it. When Becker was alive and writing, people (other than brilliant scholars like himself) had few opportunities for immortality projects other than producing offspring or excelling in business, arts, politics, or war. With the Internet, all that has changed — and that is great news for our species and our world, as well as for aspiring individuals.

Consider these shifting opportunities for leaving a lasting legacy:

1. GENETIC LEGACY: Opportunities for leaving a genetic legacy have vastly improved in the developed countries, thanks to the virtual elimination of famine, malnourishment, unsanitary public water supplies, and plagues, and by turning childhood death from a fact of life that nearly all parents experienced into a rare and shocking event. Whether our genetic legacy will be something we can be proud of is another question.

Youth are launched into a complex and often unfriendly world in which they must find their own way. No longer does the eldest son simply inherit the farm or the hardware business. No longer is the second son, while barely a teen, apprenticed out to a shoemaker in the next village. No longer do young women expect that marriage will come soon, last until death, and adequately provision themselves and their children with life’s basic necessities.

In just my lifetime, industrial and manufacturing vocations for securing a spot in the middle class have collapsed, and even a college degree no longer guarantees a living wage and a fulfilling career. And marriage for young women? Dream on. Young men no longer need marry to obtain legal, emotionally nurturing, and recurrent sex. Thus, what began in the 1970s as a welcome and exhilarating choice for women like me, has now become a near necessity: virtually all young women now need to scramble for a living wage and fulfilling career — no less than the young men.

Meanwhile, our stone-age instincts all too easily succumb to the escalating temptations of modern life, notably the “supernormal stimuli” of addictive foods, psychoactive substances, gaming, gambling, and internet porn.  Hence, good people do not necessarily die delighted in their offspring

2. MEMETIC LEGACY:  Opportunities for passing forward a memetic legacy, no matter how lowly one’s family of birth, have long been improving. In the USA, public funding of primary education blossomed in the early 1800s. In 1883 American business tycoon Andrew Carnegie began funding free public libraries in the USA, Canada, and elsewhere, so that even the poorest kids and adults could self-educate with Great Books. The 1930s ushered in compulsory secondary education. In 1944, the G.I. bill made it possible for working class war veterans to attend college, thanks to public funding of tuition support.

In my lifetime, the cultural release of blacks and women to compete equally as generators of valuable ideas and arts (“memes”), as well as businesses, will surely go down in history as a great leap forward for our species. I am a grateful beneficiary of this cultural shift.

Finally, opportunities for creating a worthy memetic legacy (I’m not talking about “celebrities” and psycho-killers who briefly secure facetime on what is sometimes called “news”) have taken another great leap forward — and beginning only about ten years ago. Thanks to the Internet, no longer does one need to acquire a graduate pedigree, an impressive resume, or a famous mentor in order to get a hearing in the intellectual marketplace of ideas. For the first time, virtually anyone with the intellect and the drive can (a) self-educate and (b) self-express.

That is what I mean by the democratization of idea generation and exchange.

The Growth of Volunteerism

We’ve all seen it. We’ve all marveled at it. We’ve all benefited from it. And yet it goes largely unheralded.

Some obscure individual gets a great idea, launches it via a blog or video and the thing “goes viral.”

Here’s my favorite example. His name is John Boswell, and I first heard about this newly graduated econ major in September 2009.  He had just posted a video on YouTube that emerged from a combination of his musical talent, his veneration of Carl Sagan, his delight in the cosmos, and his tinkering with some fun new software.

Just three-and-a-half minutes long, this music video (titled “A Glorious Dawn”) garnered a million views in just one month. (As I write, in December 2011, it is now up to 7 million views.) More important, a scan of the comments reveals that the video is still powerfully affecting — even to the point of tears — viewers young and old. (Check out one of my blogposts to read some of the over-the-top comments that were posted on the video’s YouTube page.) Or listen to me and my husband jam about it on our podcast episode titled “Symphony of Science.”

I’ve kept in touch with John Boswell by email. He continues to post more music videos in this genre — still for free. He’s got a donation button at the bottom his webpage, symphonyofscience.com, and I have donated twice. Somehow he keeps himself alive financially.

Boswell is an example of volunteerism unaltered by fame. Here is a passion to produce something that matters, that uplifts, that just might inspire a 12-year-old to pursue a career in science and maybe even to discover something that will astonish the next generation of 12-year-olds.

Call it a yearning to be noticed and respected. Call it a desire to make a difference. Call it an immortality project. Call it what you will. But you need only dabble on YouTube to get a sense that, right here, people of little or no stature are posting results of intense avocational pursuits that ultimately (in many cases) will serve the world.

YouTube’s free outlet for creative sharing has made it possible for just about anyone to launch into the world their memetic legacies. All one need do is acquire some basic geek skills (which is no more difficult than breathing for our youth), hone a fascination, and persevere in self-education and exploration of their topic of choice.

When the video is finished, it is uploaded and the waiting and watching begins. Alert your Facebook "friends" to your new video, and the “views” start to rise. As soon as one person posts an appreciative comment, you get a dopamine hit. What remains and grows is a sense of accomplishment and the warm feeling of knowing you are valued and respected.

An avocation is thus nurtured. More projects will follow. Gone are the wasted hours, the boredom, the existential angst, the fear that “I am nothing.”  Sure, for some lucky souls their fascinations may eventually yield a paying vocation. But for most of us, we are not only content with volunteerism; we are drawn more and more into it.

The Collapse of Consumerism

Thanks to the Internet, the democratization of the flow of information and the exchange of ideas is prompting a surge of volunteerism and a push-back against consumerism in the western world.

This is very good news, as both trends bode well for our culture, our society, and the community of life.

Thanks to the Internet, more and more individuals — and at astonishingly young ages —are discovering not only outlets for their creative energies but also the joy of giving away their gifts, of volunteering their time, of participating in the democratization of cultural progress.

Those of us besot with an avocational passion need no monetary draw to keep us producing and giving, producing and giving. More, we begin to start structuring our lives to free up more time to “play” in this worldwide and open exchange, this supremely democratic form of meritocracy that with no hesitation gives all comers a platform to prove the value of their projects.

For the still-in-school, this always-available creative outlet is a reminder that we do have worth and that life is not just confusion, boredom, and a set of rules and timetables not of our making. It is a way to gain respect and a sense of accomplishment.

For those who have launched into the adult world of earning a living, we learn by experience that if we really want to pursue our passion, then we have to cut back on what we buy, what we consume, what we think we must have and must do. We thus shed the default foundational value of our culture — that is, the goal to get, to spend, to acquire. Consumption as an end in itself.

For those who have fared well enough and long enough in life to no longer need to earn income, here is an outlet for putting wisdom to work. We happily volunteer time and energy toward projects of our own making — not just what our local community may offer. And, here too, the drive to consume diminishes. There is “something more” and that something more is a way to grow our legacy — to attend to our “immortality projects” — in this final phase of life.

Even the computer-phobic among us can manage to write (and with help, post) an Amazon (or Google Books) review. Old folks have a special role to play in this regard. Just tally up your favorite books of the past, find them on Amazon or Google Books, and post (what may well be) the very first review!

The Downside of Democratization for the Elite

Let’s take a look at what the Internet era means for the folks who have long stood at the helm of idea generation and exchange at a societal level. This is the arena of “public intellectuals.”

Many in this category are scholars employed at colleges, universities, and privately funded think-tanks, whose ideas and communication skills launch them into public view. A rare few make their living as columnists with the top tier of newspapers and magazines. Others are entrepreneurs who must generate their own paycheck, by way of published articles, books, and speaking fees.

In September 2011, best-selling author Sam Harris posted on his blog ruminations on the dismal future for both the publishing industry and “public intellectuals.” Entrepreneurial public intellectuals, like Sam, have grown accustomed to earning their living by writing books and articles and giving the occasional invited talk.

Sam titled his essay, “The Future of the Book.” It begins,

Writers, artists, and public intellectuals are nearing some sort of precipice: Their audiences increasingly expect digital content to be free. Jaron Lanier has written and spoken about this issue with great sagacity. You can purchase his book here, which most of you will not do, or you can watch him discuss these matters for free. The problem is thus revealed even in the act of stating it.  How can a person like Lanier get paid for being brilliant? This has become an increasingly difficult question to answer.
       Where publishing is concerned, the Internet is both midwife and executioner. It has never been easier to reach large numbers of readers, but these readers have never felt more entitled to be informed and entertained for free. . .

After a fascinating tour of his own experience in print and recent forays into ebook self-publishing, blogging, and vlogging, Sam concludes:

One thing is certain: writers and public intellectuals must find a way to get paid for what they do—and the opportunities to do this are changing quickly. My current solution is to write longer books for a traditional press and publish short ebooks myself on Amazon. If anyone has any better ideas, please publish them somewhere—perhaps on a blog—and then send me a link. And I hope you get paid.

As a “public intellectual” and author, I too am feeling the financial pinch. For ten years my husband and I have been travelling the USA in our van, giving talks — mostly at no charge. We do, however, routinely set up a book table at each venue, where we sell our own books and dvds along with a selection of books by others — meaning, we earn our living more as booksellers than as idea-makers. With the crash in the economy, fewer people are buying books and dvds. To be sure, audiences enjoy the free lecture. Individuals may even be moved and remade by it; and they tell us so.  But most leave without purchasing anything.

I cannot fault them for that. I do the same. As Sam Harris pointed out, “audiences increasingly expect digital content to be free.” I would add that audiences increasingly expect to find all forms of content online (and for free), including the most alluring format of all: free videos on YouTube.

Indeed, over the past decade of this ongoing “major transition in evolution” (in the way information is stored and passed forward), software and hardware technologies for all three modes of communication have become increasingly available to those of even modest means — limited only by one’s drive to self-learn and persist in internet empowerment.  (See also Kevin Kelly’s superb blogposts on this theme: “The Major Transitions in Technology” and “Evolution of the Scientific Method”.)

And so, while I continue to love thinking and writing and talking (on audio and video), I am no longer doing so with the hopes of producing a salable product.  No more books!  (And beginning three months ago when YouTube eliminated the 10-minute limit on video uploads, I now also declare, No more dvds!)

More and more, I am drawn into volunteerism. More and more, I look for ways to reduce my spending so that less and less of my time needs to generate income.

The game has changed utterly, irrevocably.

Halleluia! . . . (I hope)

Incentives for Building Quality
Into Immortality Projects

Let me be clear: Facebook pages that survive the individual’s death, along with the plethora of self-focussed and fluff YouTube videos, will of course pass forward in a memorabilia sort of way.  One’s great-great-great grandchild might someday thrill to catch a glimpse of what life was like for an ancestor in the days of digital deprivation, when there were still places where one had to purchase Internet access — indeed, when there were still regions lacking optical fibers or satellite feeds. As well, all such digital memorabilia may serve some function as part of a vast and easily accessible database for future scholars of cultural history and transformation.

But there are growing numbers of us whose creative and volunteer energies are sparked by a chance to pass forward something of lasting value — something that might actually improve a life (maybe a million lives) or help preserve the planet.

And we are willing to invest time in learning about that which captures our heart, our mind, our imagination, so that we truly will have something of value to post.

After weeks and months (even years) of soaking up the wisdom of others, one day an idea for a new project arrives unbidden. It may even be something we feel uniquely positioned to offer the world. So we get busy, taking great care that our text or audio or video baby will have a decent chance to capture the scarcest resource of all: the attention of other Internet surfers, public intellectuals, and immortality project creators.

Expanding and Reinforcing the Ark
for Securing Immortality Projects for Cultural Progress

Within the last few months, not one but two now-elderly creators of information-rich websites have sought to bequeath their digital babies to my husband and me. We are both in our fifties, so we are still a pretty good bet.

The websites are superb and uniquely valuable. Nonetheless, we declined. Both of us have a backlog of creative Internet projects we are aching to pursue. Assuming responsibility for somebody else’s website cannot compete with our existing creative To Do lists — no matter how worthy we regard those projects as contributors to the public good, to cultural progress.

Who will take those websites over?

And who (or, more likely, what) will take over ours in another few decades?


What new digital emergent will assure that these painstaking contributions are accessibly archived — maybe even periodically updated so that their worth not only maintains but grows?

Sure, I could take all of our audio podcast episodes one by one and laboriously turn each into a black-screen or minimal-jpg video and post them as a distinct playlist on my YouTube channel. But that is a cop-out. There really ought to be a way to keep ideas-rich audio as audio, while securely passing forward and superbly tagging each mp3 with a description and keywords, in YouTube fashion.

And there really ought to be a way to secure the continuity and accessibility of educational websites when their creators and caretakers give up the ghost.

Till Yellowstone Blows

I am certain that among the wealthy of the world are benefactors who have already secured in elaborate bunkers digital records and instructions for rebooting the Internet after a civilizational collapse (see update, below). That would be the greatest immortality project of all! Here is why:

We can direct our human ingenuity to perhaps safeguard the world from nuclear and biological terror. And it is well within our reach to nudge the flight paths of asteroids coming our way, if only we are willing to fund the effort.

But there is nothing we can do about our planet’s half-dozen civilization-destroying supervolcanoes.

So maybe digital “immortality” is a physical impossibility, even for the likes of Google.

Nonetheless, I am content to believe that at least some of my digital babies will live on — and continue to make a positive difference — until Yellowstone blows.
____________________

UPDATE 12/20/11: Kevin Kelly (author of What Technology Wants) directed me to one of those “bunkers” online, known as the WayBack Machine. It has a simple enough url: http://www.archive.org/web/web.php. And yes, indeed, my thegreatstory.org website is fully on there. It hasn’t yet connected the podcast archive pages of mine with the actual mp3’s, but finding a way to do that myself will go onto my long-term To-Do list. (BTW: I made a financial donation to the archive.)

Kevin’s email also said,

“YouTube will die some day. This is a certainty. What we need is a pan-civilization, non-profit record for all time. This is technically possible —even safe from Yellowstone supervolcano. We at The Long Now made a "backup" of 1,000 language versions of the same text (Gen 1-5) put it on a nickel disk (optical readable), and it is on its way to land on an orbiting comet right now. See the Rosetta Project at Long Now.  We could put the entire library of earth there if we wanted to.”
____________________

Connie Barlow’s immortality projects (in text, audio, and video formats) can be accessed through her main educational website: TheGreatStory.org, especially this page.
Comments (1)

R.I.P Lynn Margulis 1938-2011

Famed biologist Lynn Margulis died on November 22 at the age of 73. Lynn was one of the most creative scientists of our time. She was always pushing the edge of orthodoxy and sometimes she was right in a big way (i.e., the evolution of eukaryotes via endosymbiosis).

It would be difficult to overstate the positive impact of Lynn's work on our understanding of life, but also on my life personally, and Connie's too.

In 1989 I became the first (and only) student to be allowed to audit Lynn's "Environmental Evolution" course at the University of Massachusetts in Amherst. This proved to be a significant turning point in my life.

For the final exam, I was asked to publicly present the essence of my mentor Thomas Berry's work in just five minutes. This was one of the most empowering assignments I was ever given, and it ultimately led me to devote my life to teaching and preaching "The Great Story."

My wife Connie, too, was blessed by Lynn's generosity of spirit and mentoring support. Lynn played an instrumental role in helping Connie get her first scientific paper published in 1990, in Biosystems: "Open systems living in a closed biosphere: a new paradox for the Gaia debate". She also helped Connie get her first two books published by MIT Press, From Gaia to Selfish Genes: Selected Readings in the Life Sciences, and Evolution Extended: Biological Debates on the Meaning of Life.

Thank you, Lynn. We love you. Transiting from life to death, you have now become a cherished memetic ancestor.

Here are a few reflections on Lynn's life and legacy worth reading...

• John Brockman, Edge: "Lynn Margulis 1938-2011 'Gaia is a Tough Bitch'"

• John Hogan, Scientific American: "R.I.P. Lynn Margulis, Biological Rebel"  

• National Center for Science Education: "Lynn Margulis dies"  

• MassLive: "University of Massachusetts community reacts to death of renowned scientist and professor Lynn Marguis"
Comments

Death, Budgets, and Generational Justice

by Connie Barlow

"We think the budget mess is a squabble between partisans in Washington. But in large measure it's about our inability to face death and our willingness as a nation to spend whatever it takes to push it just slightly over the horizon."

That's how New York Times columnist David Brooks concluded his courageous July 2011 essay, "Death and Budgets."

A month earlier, Daniel Callahan and Sherwin B. Nuland co-authored a similar call to action published originally in The New Republic and also available online, "The Quagmire: How American Medicine Is Destroying Itself". These renowned experts on the medical and ethical issues of death and dying contend,

"In the war against disease, we have unwittingly created a kind of medicine that is barely affordable now and forbiddingly unaffordable in the long run. The Affordable Care Act might ease the burden, but it will not eliminate it. Ours is now a medicine that may doom most of us to an old age that will end badly: with our declining bodies falling apart as they always have but devilishly — and expensively—stretching out the suffering and decay. Can we conceptualize something better? . . . Can we imagine a system that is less ambitious but also more humane — that better handles the inevitable downward spiral of old age and helps us through a somewhat more limited life span as workers, citizens, and parents?"

Callahan and Nuland continue, "The answer to these questions is yes. But it will require — to use a religious term in a secular way — something like a conversion experience on the part of physicians, researchers, industry, and our nation as a whole."


Amen!

This is precisely why, when presenting an evolutionary picture of death to religious and secular audiences alike, I aim to parlay information and anecdote into a concoction that just might evoke a conversion experience. Here is one success story, drawn from an email I received in 2007 after delivering a sermon, "Death Through Deep-Time Eyes," at a Unitarian Universalist church in the Midwest:


"I am a funeral director intern and will be getting my license within the next couple of months. Every day I deal with death. Every day I hear sermons about Adam's sin and death's sting. I always feel strange, sitting at the back listening to whichever preacher happens to be the pick of the day. I always knew I didn't believe what they spoke.
I learned about evolution and the Big Bang from teachers who didn't believe in it, but who had to teach it. I watch programs on it on the Discovery Channel. I believe it. But I have never had it put into a story that could define me. It was always distant, something that happened in the past. You brought to me the first creation story that I could relate to. No talking snake in a tree tempting a nude woman. No. You gave me words to a story that is based in fact — something I can make my own, something that is my own. And for that, I thank you."

Death denial in our culture is not only entrenched; it is the default perspective because of our dominant religious heritage. A large segment of the American population still believes (or regularly listens to preachers who believe) in the Bible literally. For them, the explanation for why there is death is drawn from Romans 5:12 (attributed to the writings of the Apostle Paul): "Wherefore as by one man sin entered the world, and death by sin; and so death passed upon all men."


Death in our culture is seen as bad and wrong. Death simply shouldn't be. How do we know this? Because ancient oral stories unfairly frozen into unchanging scripture — what Michael Dowd calls, "idolatry of the written word" (also here) — claim that there was no death in the beginning — at least no death of animals. Not only did the lion lay down with the lamb, but even T. rex is said to have been a vegetarian in those halcyon days when our species numbered merely two. (Note: If you are unaware of this literalist explanation for how death came into the world, take a few moments to read online a creationist tract on this topic, in cartoon format — or visit the Creation Museum in northern Kentucky.)

Not only do teachers and preachers of fundamentalist leanings point to scriptural passages that portray death as "the enemy" (1 Corinthians 15:26), but the culture of our medical institutions reinforces it. Death-as-enemy, sadly, is reinforced, as well, by the economics of the ratings systems for doctors and hospitals.

And thus I regularly challenge my audiences by proposing that, "No generations before our own, anywhere on Earth, experienced more prolonged emotional anguish, family discord, and even physical suffering in relation to the passing of elders than do the generations of Americans alive today."

David Brooks, Daniel Callahan, and Sherwin Nuland have now given me the courage to add, "and none of the multitudes who came before us had an opportunity to die in ways that were as flagrantly heedless of the well-being of future generations as the end-of-life practices that prevail today."

Consider, for example, the illness of aging that is the most emotionally and financially devastating of all: dementia. Back on the farm, when grandpa entered the night-wandering phase of (what is now called) Alzheimer's disease, there would have been no locks on doors. Indeed, when little Johnny noticed grandpa on his way out one cold autumn evening, mama would likely have said, "Hush, child. It is Grandpa's time to go." Next morning, Grandpa would be found asleep in the barn or the hayfield — no, dead. Death by hypothermia is actually not a harsh way to go. It begins with sleep; the aftermath looks like sleep.

If Grandpa survived the wandering phase of Alzheimer's, however, then when he lost the ability to respond to hunger and to feed himself, no one would insist on doing it for him. Or if a stroke broke his capacity to speak and swallow, no one would rush to install a feeding tube. Rather, "Hush, child. In his own way, Grandpa knows his time is over."

And when an elder became bedridden for any reason — heart failure, broken hip, stroke — it would not be long (especially in the winter months) before sluggish lungs would welcome home "the old person's friend": pneumonia.

In contrast, several decades ago, my cousin received a call from the late-stage Alzheimer's facility where my aunt had been bedridden for several years. Long a victim of bedsores, she had finally contracted pneumonia. When my cousin suggested that no antibiotics be given, he was scolded, "You mean you want to kill your mother?!"

Many of us carry stories such as these. Indeed, by the time we reach middle age, almost all of us have at least second-hand awareness of the horrors that arise from the reckless availability of and passive submission to advanced medical interventions that do no more than buy a little time before the next medical intervention is advised. Those increments of weeks and months are purchased at enormous cost. For what? And, just as importantly, by whom?

Probably not by me: I am 59 and my nation is still piling on the debt and allocating ever more of its tax revenues to paying interest on and rolling over old Treasury bills.

No. Those who will ultimately pay for keeping grandma institutionalized, drugged, and strapped to her chair or for spending the equivalent of a half dozen college educations in the final six months of grandpa's dwindling life will probably be the age group whose life prospects are already shrunken and gray, owing to levels of college debt and underemployment that my generation would have considered immoral if not insane.

So, yes, I stand with David Brooks. I stand with Daniel Callahan and with Sherwin Nuland. I stand for generational justice and compassion and care for the dying — including those for whom death would be a blessing and would naturally come if we would but stand back and allow it to run its gentle course.

So let more of us dare to speak what we already know: heroic efforts for the disabled elderly are all too often demonic. Whatever communal good our elders contributed while still hale and hearty, however proud their legacy to offspring, community, and nation, the ways in which they (and more often "we") manage their end of life care and choices will determine not only how we remember them but what they effectively pass forward.

Will we allow them to pass forward a healthy and prosperous future to the generations in waiting? Or will our sick assumptions about death-as-enemy consign them passively to the negative side of the ledger? Will we who make the decisions in their stead fail them in our final acts of love?

"Hush, child. This is Opa's final gift to you and to your children to come. One day, many, many years from now, it will be your time to pass the gift forward. And you will be grateful for that opportunity, just like, in his heart, Opa surely now feels."

This is a vision that I find beautiful — as well as necessary. And I speak from experience, thanks to the simple generosity of an ordinary woman who allowed me to walk to the threshold with her, arm in arm.

As I've written about elsewhere, in 1998 my mother fought her way out of the hospital after yet another heart attack (she had received bypass surgery eight years earlier). She explained, "Con, I don't want my grandchildren paying for this anymore."

As a General Motors widow and Medicare beneficiary, Helen knew that "her" grandchildren paid not a dime. But my mother considered all the grandchildren in America as her responsibility. And so, yes, her grandchildren would indeed be paying for the next stent or pacemaker or whatever would be installed this time around.

She even refused diagnostics: "I don't need to know how much I damaged my heart this time, Con. I want to go with a good old-fashioned heart attack — just like my mother did." And so I was invited to return to live with my mother, to help her walk the final path toward her own notion of an honorable death. I felt privileged to comply.

As a freelance writer, with no children to care for, and whose worldview could be trusted to honor my mother's wishes, I would be the helpmeet for this final phase of her life. Five weeks after I moved in and helped her cross off item after item in her final to-do list, she and I together accomplished her three-fold wish: to die at home, with no pain (well, reduced pain, thanks to morphine), and with someone to hold her hand.

Simple. And it was. Yet how few of my peers have a parental end-of-life story as vibrant, even joyous, as mine?

This essay is thus a call for generational justice, for generational generosity. It is a call for a religious conversion of sorts. To begin, let us more widely share our stories of elegant and triumphant deaths. And let us share the stories, too, where it just seemed to all go wrong — and for far too long.

It is time, as well, to share the sad new stories accumulating of youthful dreams closing down — like the story of one young woman in Eugene, Oregon. With a master's degree in Communication and an abundance of student debt, she was grateful to have the same job she had held as an undergraduate: on a call line in a Verizon Center. "All the nonprofit job opportunities are taken," she told me. "So, none of my student loans will be forgiven. My biggest decision now is whether to try to pay them off in 12 years or 20."

What about your dreams? I asked.

She looked at me incredulously — as if I had spoken in a foreign tongue. Her boyfriend, sitting alongside, glared at me. In that moment, I was just one more over-indulged boomer whose generation was largely responsible for the mess those two had inherited.

Earlier in the conversation I had committed another faux pas. The young woman had told me the story of her beloved grandmother, who encouraged her so much as a child, but who now was saddled with dementia in a nursing home. "Do you realize," I said matter-of-factly, "that just six months of what it costs to take care of your grandmother would probably pay off your entire college debt?"

The point of this essay is not to restate "The Case for Killing Granny" (which was the cover story of a September 2009 issue of Newsweek). It is not advocacy for medical rationing or any other top-down directive. Rather, I wish to invite other boomers and what remains of the generation ahead of us to co-lead a bottom-up initiative to just say no to unrealistic, dishonorable, and supremely costly interventions that only prolong suffering — not life. If even a fraction of us do this, then rationing of health care will not be necessary.

Fortunately, we are already on the cusp of a revolution in medical practices that will boost our ability to say no to costly diagnostic testing. The impetus? Data now reveal that standard diagnostic tests (PSA tests, mammograms) for the asymptomatic middle-aged and elderly cause more harm than good. The cover story of an August 2011 Newsweek (titled, “One Word Can Save Your Life: No!”, by Sharon Begley) begins,

Dr. Stephen Smith, Professor emeritus of family medicine at Brown University School of Medicine, tells his physician not to order a PSA blood test for prostate cancer or an annual electrocardiogram to screen for heart irregularities, since neither test has been shown to save lives. Rather, both tests frequently find innocuous quirks that can lead to a dangerous odyssey of tests and procedures. Dr. Rita Redberg, professor of medicine at the University of California, San Francisco, and editor of the prestigious Archives of Internal Medicine, has no intention of having a screening mammogram even though her 50th birthday has come and gone. That’s the age at which women are advised to get one. But, says Redberg, they detect too many false positives (suspicious spots that turn out, upon biopsy, to be nothing) and tumors that might regress on their own, and there is little if any evidence that they save lives.

But overuse of advanced medical procedures goes beyond diagnostics. It includes costly interventions that have become standard procedures. Begley writes,

The dilemma, say a growing number of physicians and expert medical panels, is that some of this same health care that helps certain patients can, when offered to everyone else, be useless or even detrimental. Some of the most disturbing examples involve cardiology. At least five large, randomized controlled studies have analyzed treatments for stable heart patients who have nothing worse than mild chest pain. The studies compared invasive procedures including angioplasty, in which a surgeon mechanically widens a blocked blood vessel by crushing the fatty deposits called plaques; stenting, or propping open a vessel with wire mesh; and bypass surgery, grafting a new blood vessel onto a blocked one. Every study found that the surgical procedures didn’t improve survival rates or quality of life more than noninvasive treatments including drugs (beta blockers, cholesterol-lowering statins, and aspirin), exercise, and a healthy diet. They were, however, far more expensive: stenting costs Medicare more than $1.6 billion a year.

By the time the first boomer reaches three score and ten, I see us coming together as a generation, once again, and declaring something along these lines: that until every 20-something in America, and every 30- or 40-something with kids, has taxpayer-supported health insurance, and until there are community service options for working off college debt, we boomers will refuse to tap Medicare for any heroic medical interventions beyond our 70s. If we can find a way to ensure that all the youth have a chance to create a full and contributing life, and that they receive no less taxpayer support for their health care than we do, then maybe (or maybe not) we'll accept a Medicare-funded bypass or pacemaker or cancer surgery or hip replacement in our 80s.

But until the day that generational justice is assured, we'll foment a new revolution. Not just dignity, but death done with generosity, death done with celebration and joy and play. Death done in a way that leaves a legacy — not of insupportable debt but of wondrous stories of light-hearted farewells and crazy, cool send-offs. Perhaps like the one I heard about just last week.

My husband, Michael Dowd, and I were theme speakers for a week-long church summer camp in the San Bernardino Mountains of California. For nine years we have lived entirely on the road as "America's evolutionary evangelists," bringing the saving good news of a mainstream scientific naturalism to communities from coast to coast. For this particular summer camp we divided our twin talks into "Evolutionize Your Life" (Michael's topic) and "Evolutionize Your Death and Legacy" (my own).

After each talk outdoors under the pines, the group would re-assemble on the lodge porch for "Talk Back," for which I solicited stories rather than comments and questions. And the group happily obliged. There were stories of trauma, stories of prolonged drama, stories dire enough to ignite a revolution. And there were a few stories as glorious as mine with my mom.

One young woman told of how her grandfather, who was dying of cancer at home, called for a final party. Family and friends arrived and told stories and cried and laughed together. Her bedridden grandfather did too. Then the old man signaled for a pre-arranged final gift: an extra dose of morphine. He closed his eyes. He died not in secret, not with shame, but with celebration and love — and with this story as his final gift.

So let's proclaim a revolution that, clearly, has already begun. I suggest a six-fold path that each of us, as individuals and in small collectives, can walk. Consider my suggestions; then offer your own.

Step 1. Seek out a spiritually fulfilling way to embrace death, rather than fight or fear it.

In my own presentations, audios, and videos, I advocate the Epic of EvolutionBig History — as the science-based worldview that can allure us into befriending death. A variety of sciences have revealed that death not only plays a necessary role, but also a creative role in the emergence of complex atoms and then life and complex life and culture in this universe. I also recommend the award-winning documentary "Griefwalker," which movingly explores the death-and-dying work of Canadian Stephen Jenkinson. The "Griefwalker" worldview (born of ecological, place-based native wisdom) is compatible with my own — and with any other secular or religious perspective that does not make of death an enemy. (See my husband's poignant post: "Thank God for Death—Could Anything Be More Sacred, More Necessary, More Real?")

Step 2. Do not wait for middle or old age to begin your spiritual work of embracing your own inevitable death and the deaths of those you love.

There are two powerful reasons to befriend death sooner rather than later. The first reason is for your loved ones; until you can celebrate death as a natural, necessary, and sacred part of the circle of life, you will be like a bull in a china shop when in the presence of those who are consciously and gracefully dying. Worse, you may be the recalcitrant family member whose death denial makes medical staff wary of a lawsuit if they do anything less than everything for your loved one slipping away. The second reason to do the work now is best expressed by Stephen Jenkinson: "Not success, not growth, not happiness; the cradle of your love of life is death." If you want to live fully, then invite the specter of your own death to become your cheerleader for vibrant living.

Step 3. Extend your sense of self as you age — to your descendants, to the generations to come, and to the larger body of life.

Perhaps the easiest way to shed your own fear of death is to cultivate a sense of, what Thomas Berry called, your "Great Self." Perhaps begin with redefining yourself within the river of time. Your small self is the whirlpool or the standing wave; your Great Self is the river. As well, Joanna Macy, Arne Naess, John Seed, and other proponents of "deep ecology" offer profound writings and other resources for cultivating an "ecological self." For me, the extended-self image I lean toward is that I might feel no more loss at the moment of death than that of a tree losing but one of its leaves.

Step 4. Attend (with gusto) to your legacy throughout your middle and later years.

One's deathbed is not the time to regret how little of merit, of lasting value and consequence, you may be passing forward. Instead, discover the joys of giving, of volunteering, of mentoring, of contributing to the younger generations your natural gifts of heart or mind and your acquired skills and wisdom. If you raise children during your life, a perfect time to gently invite legacy-consciousness into your choices is when the last one finally leaves home.

Step 5. Seek out opportunities to share your death-friendly perspective and to evoke compassionate listening of the perspectives and stories of others.

Explore various ways within your family, church, and community to formally and informally share best practices for overcoming death anxiety and for encouraging an ethic of generational justice and generosity. "Best practices" include how to firmly, but lovingly, communicate our desires, our intents, and the moral drives that ground those commitments to family members who may have trouble hearing and graciously accepting the choices we intend to make. And there's nothing quite as life-giving as expressing heartfelt gratitude to those who have positively impacted you in some way, or sorrow/regret and a sincere apology to those you've consciously or unconsciously harmed.

Step 6. Take a deep dive into reconsidering the dance between individual rights and broader responsibilities in the death and dying process and in advanced care for the elderly.

"Right to die" ideally would be accompanied by an ethic of responsible communication — a commitment to lovingly (but firmly) communicate one's intent with all loved ones for whom withdrawal from medical intervention or active life termination may conflict with religious or other norms — or for whom death anxiety is so strong that conversation about death is difficult. As well, those who actively choose generational generosity rather than costly medical interventions have a unique and powerful opportunity to heal estranged familial relationships and tarnished friendships. Not only does impending death signal a "last chance" for reconciliation, but it is not unusual for those who calmly and clearly renounce medicalized dying to access remarkable psychological resources of patience, power, and empathy. It is then that miracles can occur: old relational wounds truly can be healed. Just as important, clearly communicated and legally enforceable intents and actions are essential for preventing new rifts among family members that may ensue if irresponsibility on the part of the dying pushes the decision-making downstream.

"Oh, Helen, you'll have to come again soon."

"Oh no, dear, this is the last time. It has been lovely."

* * *
ADDENDUM: October 19, 2011. Another important article has come to my attention: “LETTING GO” by Atul Gawande, accessible online HERE.

The key fact it presents is this:

“In 2008, the national Coping with Cancer project published a study showing that terminally ill cancer patients who were put on a mechanical ventilator, given electrical defibrillation or chest compressions, or admitted, near death, to intensive care had a substantially worse quality of life in their last week than those who received no such interventions. And, six months after their death, their caregivers were three times as likely to suffer major depression.

That led me to this insight:

Beyond cost and suffering, one of the saddest aspects of high-tech medicine in a death-denying culture is that it too often strips patients and family members of a basic human right: the right to end-of-life conversations. If a doctor is unwilling to acknowledge that an operation will only delay death, then too often the patient dies in surgery or falls out of cognitive capacities before final expressions of love, gratitude, and forgiveness take place. Or, because death is delayed, a family member flies in for a few days or a week or two, then has to return home to work and kids — but during that visit they cannot have a true final conversation because that would seem morbid or out of line if there is still ‘hope.’  So then they fly back again when death is finally acknowledged, but by then the patient is never really conscious, so the chance for a final conversation truly is lost. For most people it is not enough to be physically at the bedside as the loved one dies – if the time for final words has already passed.

* * *

CONNIE BARLOW is the author of four books that celebrate meaningful understandings of mainstream evolutionary and ecological sciences. She and her husband, Rev. Michael Dowd, have spoken to more than 1,500 religious and secular groups since April 2002. Click HERE to see her writings, audios, and videos on death, which can also be accessed via her website, TheGreatStory.org
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Thank God for Death: Could Anything Be More Sacred, More Necessary, More Real?

by Michael Dowd
I want address the question of death because most people, religious and non-religious folk alike, are clueless regarding what has revealed about death in the past few hundred years, through science. And this ignorance has resulted in untold suffering — for families and for society as a whole, as well as for individuals.

I am regularly asked (more often since I was diagnosed with lymphoma), "Do you believe in an afterlife? What do you think happens to us when we die?" My typical response is to make one or more of the following points...

1. As I discuss in "The Gifts of Death" section of Chapter 5 of my book Thank God for Evolution, it is vitally important when thinking about death in the abstract, when contemplating the inevitability of our own demise, or when grieving the loss of a loved one, to have an accurate understanding of the positive role of death in the Universe. Widespread ignorance of the scientifically indisputable fact that death is natural and generative at all levels of reality, coupled with our culture's failure to interpret the science in ways that will help us to actually feel that death is no less sacred than life, result in not only distorted but outright disabling views. This does not, of course, take away the anguish and grief of death. Such intense feelings are normal and healthy. They should be honored and allowed time to dissipate naturally—which can often take a year or longer. But what this perspective does do is that it provides a reality-based container for death. We no longer need to think that death is a cosmic mistake or that humans are responsible for the existence of death in the universe.

(Here you can sample testimonials from our travels that demonstrate the emotional gifts of a science-based perspective, meaningfully interpreted. It's also important to remember that Moses, Jesus, the Apostle Paul, and Muhammad could not possibly have known what we know about death. This evidence-based understanding couldn't have been revealed in a way that we could have received it prior to telescopes, microscopes, and computers.)

2. Looking at reality through evolutionary, "deep-time eyes", my sense of "self" does not stop with my skin. Earth is my larger Self. The Universe is my even larger Self: my Great Self. So, yes, "I" (in this expanded sense) will continue to exist even after "I" (this particular body-mind) comes to a natural end. There is deep comfort in knowing that my larger Self will live on. More, I am powerfully motivated to be in action today precisely because I do not ignore or deny the inevitability of death. My small self has but a brief window of opportunity to delight in, and contribute to, the ongoing evolution of the body of life. Truly, this is it; now or never. I am immensely grateful for both the comfort and the compulsion born of this sacred evolutionary perspective.

3. From an evidential standpoint it seems clear that we go go to the same place we came from before we were conceived—the same "place" that trillions of other animals and plants have gone throughout Earth's history when they died. Some speak about it as "coming from God and returning to God". Others talk about it as "coming from mystery and returning to mystery". Still others as "coming from nothing and returning to nothing". All these I sense as legitimate and emotionally satisfying ways of thinking and talking about what happens at death. And as I sometimes humorously respond, when asked about the afterlife, "If where I go isn't the same place that all other plants, animals, and species throughout Earth's history have gone, I'm gonna be pissed!" :-)

4. A universal experience whether or not we can admit it, death is the sole companion to life. From the moment we take our first breath, the inevitable result is death. Thus, any so-called "faith" which doesn't include trusting that whatever happens on the other side of death is just fine is, in my view, really no faith at all. Fear of a terrifying, hellish after-death scenario, OR attachment to a blissful, heavenly after-death scenario are just that: fear or attachment; not faith, not trust. As legendary Griefwalker and "Angel of Death" Stephen Jenkinson puts it: "Not success. Not growth. Not happiness. The cradle of your love of life ... is death." (I highly recommend purchasing the DVD "Griefwalker". Once you watch it you'll probably just keep loaning it out.)

5. The idea of being "rewarded" (condemned?!) with experiencing even one year (much less millions or billions of years) of after-death existence free of struggle, challenge, or difficulty, would occur to me as hell, not heaven, were I to think of (or worse yet, witness from on high) the divinely decreed eternal torment and everlasting torture of others who had in some way missed the mark. Adding to the repugnance would be an after-death future in which those relegated to never-ending suffering included not only perpetrators of outright evil but also those condemned for nothing more than holding wrong beliefs—that is, beliefs different from mine.

6. Here is the way I discuss the subject of "the afterlife/what happens when we die" on pages 116-117 of my book, Thank God for Evolution:

My formal training for becoming a United Church of Christ minister culminated in an ordination paper that I wrote and then presented to a gathering of ministers and lay leaders. Titled “A Great Story Perspective on the UCC Statement of Faith” (available at TheGreatStory.org), my talk stimulated a host of comments and queries. A widely respected minister posed a question I shall never forget. “Michael,” he began, “I’m impressed with your presentation and with the evolutionary theology that you’ve shared with us. However, there’s a little boy who lives in me, and that little boy wants to know: Where is Emory?”

Emory Wallace, a well-known and beloved retired minister, had for nearly three years guided me through my ministerial training. He died suddenly, at the age of 85, just a few weeks before my ordination hearing.

“Where is Emory?” My mind went blank. I knew I needed to say something—after all, this was my ordination hearing—so I just opened my mouth and started speaking, trusting the Spirit to give me the words. My response went something like this:
Where is Emory? In order to answer that question I have to use both day language—the language of rational, everyday discourse—and night language—the language of dreams, myth, and poetry. Both languages are vital and necessary, just as both waking and dreaming states of consciousness are vital and necessary. Like all mammals, if we are deprived of a chance to dream, we die. Sleep is not enough; we must be permitted to dream.

We, of course, know that day experience and night experience are different. For example, if you were to ask me what I did for lunch today, and I told you that I turned myself into a crow and flew over to the neighborhood farm and goofed around with the cows for a little bit, then I flew to Dairy Queen and ordered a milkshake—and if I told you all that with a straight face—you might counsel me to visit a psychiatrist. However, if you had asked me to share a recent dream and I told the same story, you might be curious as to the meaning of that dream—but you wouldn’t think me delusional.

So in order to respond to your question, “Where is Emory?” I have to answer in two ways. First, in the day language of common discourse, I will say, Emory’s physical body is being consumed by bacteria. Eventually, only his skeleton and teeth will remain. His genes, contributions, and memory will live on through his family and through the countless people that he touched in person and through his writings—and that includes all of us.

But, you see, if I stop there—if that’s all I say—then I’ve told only half the story. In order to address the nonmaterial, meaningful dimensions of reality I must continue and say something like: “Emory is at the right hand of God the Father, worshipping and giving glory with all the saints.” Or I could say, “Emory is being held and nurtured by God the Mother.” Or I could use a Tibetan symbol system and say, “Emory has entered the bardo realm.” Any or all of these would also be truthful—true within the accepted logic and understanding of mythic night language.

My response was well received in that meeting of nineteen years ago, and it has shaped my theology ever since. Recently, I blended the core of that distinction into my Great Story talks and workshops. I am sure that my understanding of day and night language—language of reason and language of reverence—will continue to evolve and thus inform my preaching, my teaching, and my personal relationship God, the fullness of Reality.

ALSO SEE: Duane Elgin: "Can Death Become Your Ally?"

[Posted August 12, 2011]
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