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 Evolution — Big 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."

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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.

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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