GBO NEWS: Ageist Provocateur Zeke Emanuel’s Jovial Death Wish at 75
GENERATIONS BEAT ONLINE NEWS
E-News of the Journalists Network on Generations
October 10, 2014 — Volume 14, Number 13
Editor’s Note: GBO News, e-news of the Journalists Network on Generation publishes alerts for journalists, producers and authors covering generational issues. Send your news of important stories or books (by you and others), fellowships, awards or pertinent kvetches to GBO News Editor Paul Kleyman. If you receive the table of contents as e-mail, just click through to the full issue at www.gbonews.org.
IN THIS ISSUE: The Annual Blessing of the Indigenous Canoes.
1. THE STORY BOARD: Death on the Gen Beat Takes No Holiday: Atul Gawande’s Being Mortal; *** Nina Bernstein’s “Fighting … To Die at Home” in the New York Times; *** “Business of Dying” series in the Washington Post
2. EYES ON THE PRIZE: Associated Press-NORC Reporting Fellowship; *** Stanford’s Knight Journalism Fellowship Deadline, Dec. 1
3. DR. ZEKE EMANUEL on Death & Peter Pan: On His Atlantic Essay, “Why I Hope to Die at 75,”
4. GEN BEATLES NEWS: The Caregivers author Nell Lake at WriteAngles Conference in Massachusetts
1. THE STORY BOARD: Death on the Gen Beat Takes No Holiday
This year’s spate of end-of-life media continues appearing thanks in great part to the Institute of Medicine’s (IOM) new book-length report, Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life, the national consensus study GBONews.org discusses in our last issue. Here are links to several new additions to this post-death panels resurgence of discussion on this essential national debate.
*** Being Mortal: Medicine and What Matters in the End (Metropolitan Books/Macmillan) by Atul Gawande, MD, adds to growing body of literature, some of the best by medical practitioners of Asian Indian heritage, calling for a complete revamping of U.S. health care, with a focus on chronic illness and palliative care. Out, too, this past summer, for instance, was the memoir by Sandeep Jauhar, MD, Doctored: The Disillusionment of an American Physician (Farrar, Straus and Giroux, also a Macmillan imprint).
Mother Jones ran a Q&A with Gawande, a long-time New Yorker contributor, titled, “We Have Medicalized Aging, and That Experiment Is Failing Us.” MJ’s introduction notes Gawande’s discussion of several “always-hopeful oncologists who, rather than accept the inevitable, coax their patients into trying futile fourth-line chemotherapies that nobody can pronounce. And then you’ve got hospitals axing their geriatrics departments (aging Boomers be damned) because Medicare won’t cover the extra costs of making someone’s last years worth living.”
Among those making an appearance in the book is Eden Alternative and Green House founder Bill Thomas, MD, author of Second Wind: Navigating the Passage to a Slower, Deeper, and More Connected Life (Simon & Schuster, 2014), whom Gawande tells MJ is the kind of “crazy man” who can make change happen. In addition, Gawande features Keren Brown Wilson, the Oregonian who pioneered assisted living for middle class seniors. In addition, MJ links to Gawande’s 7:26 min. interview on The Daily Show with Jon Stewart (Oct, 6).
*** “Fighting to Honor a Father’s Last Wish: To Die at Home,” [http://tinyurl.com/q5p2cjy] by Nina Bernstein, New York Times (Sept. 25) is a richly reported—starting on page one and covering two full print pages–study of national dysfunction in end-or-life care. This well honed article generated a Times Editorial (Oct. 4), “Care at the End of Life” [http://tinyurl.com/pd8tvqm], which emphasized two key issues Bernstein raises in the disturbing family case she detailed in the article. The editor’s summarized, “Virtually every institution took actions that served its own needs, not the patient’s. And there was no coordination between Medicare and Medicaid.”
The Times Editorial Board explained that the State of New York is beginning a pilot program in some counties “in which interdisciplinary teams, including the patient and a family member, will develop a care plan that best meets a patient’s needs. If that works, it may end many longstanding abuses.” (This sounds like goals of the 20 or so other state coordinated care demonstrations programs happening under Obamacare.)
They also praised the IOM report, which it notes calls for “new payment systems by public and private insurers to encourage health care providers to integrate medical and social services, coordinate care, and include families and patients in advance planning. That could enhance a patient’s quality of life and make costs for the health care system sustainable.”
Columbia Journalism Review (CJR) blogger Trudy Lieberman analyzed Bernstein’s post (Sept. 29) in “Can a chilling New York Times story help spark new dialogue on end-of-life care?” Lieberman calls the piece “a tour de force that deserves a CJR Laurel.”
Lieberman goes on, “Chronicling the relationship between a daughter and her elderly father at the end of his life, Bernstein describes how screwed up the long-term care system really is, and how unfriendly it can be for the millions of people—America’s oldest and most vulnerable—who are ensnared in its rapid transformation to profit-making enterprises.”
Noting pushback this past summer against the much more narrowly focused investigative piece in Huffington Post (including by GBONews’ editor), Lieberman lauds Bernstein for her incisive framing of the systematic factors frustrating the dying process for so many. Bernstein quotes one of the IOM report’s authors, Brown University geriatrician Joan Teno, MD, stating, “We have these frail older people moving about in the medical-industrial complex that we’ve constructed. It’s all about profit margins. It’s not about caring for people.”
Bernstein also interviewed Joanne Lynn, MD, who directs the Altarum Institute’s Center for Elder Care and Advanced Illness, asking, “Why can I get a $100,000 drug, but I can’t get supper?”
Lieberman concludes, “Bernstein’s article is part of a resurgent conversation about end-of-life care. This renewed attention to an old problem might just spark a new dialogue about how to finance long-term care, which remains one of the gaping holes in American healthcare.” She adds, “The IOM’s call for a fundamental overhaul of long-term care gives the press another chance to lead instead of react.”
*** “Business of Dying” is an ongoing series by the Washington Post’s Peter Whoriskey with data analyst Dan Keating, with four mainbars so far, plus some related news reports. Like the Huffington Post’s “Hospice, Inc.” article, the Washington Post series so far is narrower in scope than the NYT’s Bernstein’s article. WaPo concentrates more on government spending, especially in Medicare.
But the series somewhat widens the angle of the issue from the HuffPost treatment. For instance, the third installment (Aug. 3) cites Brown University’s Teno, stating, “One part of the reason is some of the new hospice providers may not have the same values — they may be more concerned with profit margins than compassionate care.” GBONews.org will be following the WaPo series as it unfolds with interest in how well it encompasses not just government accounting, but also the fundamental issue of how too many Americans end up in hospice too briefly with little chance to really benefit from the best palliative care can offer. Perhaps, Dr. Gawande’s book will help to expand the discussion.
2. EYES ON THE PRIZE
*** A 10-Month Fellowship on Aging is the fellowship prize being offered by the Associated Press-NORC Center for Public Affairs Research, in partnership with the AP Media Editors. With a focus on the economics of aging and work, this is a residential fellowship located at the headquarters of the independent research organization NORC at the University of Chicago. This single fellowship, funded by the Alfred P. Sloan Foundation, is very promising and will contribute to AP’s “Aging America” series. Journalists are eligible who work in text, radio, television or online. The fellowship will begin this January.
The website states, “While the fellow’s reporting will be targeted for a national audience, there will be opportunities to add a local or regional focus. At the end of the 10 months, the fellow will return to the newsroom with skills and experiences designed to elevate not just their own coverage of economic issues but also to share with colleagues.”
More information about the fellowship including the online application process is available at www.apnorc.org. (As I’ve noted in the past, in this case the acronym does not stand for Naturally Occurring Retirement Communities, the NORC-onym of gerontology. We’ll leave it to our readers to uncover what the journalism version does mean, since the center’s website violates the basic AP Style Book principle of spelling it out on first use – or anywhere for that matter.)
*** December 1 is the Application Deadline for the John S. Knight Journalism Fellowship, for both U.S. and international applicants. This prestigious program, held at Stanford University for a school year (10 months), will tap 20 journalists and “journalism entrepreneurs” from the United States and abroad. The nod will go to journalists who “identify and articulate a specific journalism challenge they want to explore” toward spotlighting potential solutions they will continue to work on beyond the fellowship year. The website stresses, “If you’re looking for a traditional sabbatical-style fellowship, this is not the program for you.”
It explains, “Fellows in our program work on solving challenges facing journalists and journalism, such as finding ways to reach underserved communities, leveraging technology to help journalism, seeking innovative ways to financially support quality journalism as well as fostering independent journalism in countries without a history of a free press.”
Start by reading the “Become a Fellow” section of the Knight site. That page also includes links to descriptions of past fellows , program benefits and the online application. It’s a complicated application process, so heed their advice, “Don’t wait until the last minute to apply!” If you have questions, e-mail them at info@kf.stanford.edu.
3. DR. ZEKE EMANUEL: AGEIST PROVOCATEUR
By Paul Kleyman
In “Why I Hope to Die at 75,” Ezekiel J. Emanuel, MD, once again plays the agent provocateur—or more aptly this time, the ageist provocateur– announcing in the Atlantic cover story (Sept. 17) that he plans to refuse any “life-prolonging” medical treatment or drugs after his 75th birthday. The article has generated so much attention that the PBS “New Hour’s” Judy Woodruff, conducted an extensive interview with the ever-jocular bioethicist on Oct. 3.
Emanuel insists throughout this lengthy, disjointed and dishonest essay that his position is purely personal—a view which the distinguish oncologist, 57, retains the right to reverse when the time comes. Yet he proceeds with a more expansive ethical appeal, facilely shifting from “I” to “we” within paragraphs, like a sly prosecutor.
A more careful examination of Emanuel’s article, though, exposes that far from stimulating healthy debate on longevity, its muddled logic bares his poor understanding of chronic disease processes and shows that in the end he is more enamored with youth than those he accuses of perversely embracing their vigorous younger selves.
What’s more, GBONews found that Emanuel’s primary scientific source flatly rejects his use of her research.
“The American Immortal”
Emanuel’s principal foe is “the American immortal,” those he derides for fruitlessly fending off their mortality through endless exercise and consumption of protein drinks. A key shaper of Obamacare and former head of the National Institutes of Health’s Office of Bioethics, he fervently denies favoring health care rationing among the old. Also, he adamantly opposes euthanasia. That’s an accusation Sarah Palin and others leveled when they attacked aspects of his work on the Affordable Care Act as establishing “death panels.”
Still, Emanuel contends that Americans have no right to hang on beyond 75, beyond what he perceives as one’s productive years. Even though he concedes that 75 is an arbitrary choice, he goes on, “The deadline also forces each of us to ask whether our consumption is worth our contribution.”
In his Atlantic essay, the influential Zeke–brother of Chicago Mayor Rahm and Hollywood agent Ari–slips easily from statements of personal preference to general indictments of older Americans, that is, from his ethical “I” to the profligate “we.”
Emanuel, now director of the Department of Medical Ethics and Health Policy at the University of Pennsylvania, asserts, “By the time I reach 75, I will have lived a complete life. I will have loved and been loved. My children will be grown and in the midst of their own rich lives . . . . I will have pursued my life’s projects and made whatever contributions, important or not, I am going to make.”
Later, though, he writes, “The specificity of 75 means we can no longer just continue to ignore them and maintain our easy, socially acceptable agnosticism.” Agnosticism? The word indicts aging Americans for presuming to be neutral toward their obligation to—what?–decline medical treatment, atrophy and whither away like an autumn leaf? Back to “me,” Emanuel pleads that it will be his mission in the coming 18 years to wade through the difficult questions he raises for himself, rather than “trying to hang on to every additional day and forget the psychic pain they bring up, while enduring the physical pain of an elongated dying process.”
But the arduous dying process he describes in this article is not in the range of futile medical interventions imposed upon so many Americans in their final months of life. For Emanuel, after 75, preventive measures such as “colonoscopies and other cancer-screening tests are out,” as well as pacemakers, bypass surgery and the rest, regardless of his actual prognosis. “What about simple stuff,” he asks? “Flu shots are out.”
The late geriatrics pioneer and Pulitzer Prize-winner Robert N. Butler, MD, founding director of the National Institute of Aging, is surely getting an energetic spin in his rest. For decades Butler countered arguments for health care rationing of the old by Emanuel’s predecessors, especially bioethisist and Setting Limits author Daniel Callahan. Butler argued convincingly that the ethical dilemma of U.S. heath care was not overspending at the end of life, but chronic undertreatment of the old due to pervasive ageism in our health care system.
Scientist to Emanuel: “I Feel Used”
Emanuel contends that advanced age almost always arrives with burdensome decrepitude. He invokes research, which he claims challenges the longstanding concept that modern science will enable us to maximize our well-being and compress decline (morbidity) into the very last of life. He reminds us that most longevity gains in infancy and childhood were achieved early in the 20th century through vaccines, antibiotics and other medical miracle. Then Emanuel confronts the very idea that it has been worthwhile since the 1960s for us to add most of our longevity gains later in life: “Rather than saving more young people, we are stretching out old age.” Exactly how the vampire-like tradeoff he describes is being made, isn’t exactly clear.
Emanuel goes on to justify his argument that age brings relentless descent for most of us by invoking the scientific analysis of respected University of Southern California gerontologist Eileen M. Crimmins. He describes her findings to show that increased human longevity has come not with waning disability, but instead with waxing decline. Others can explore the complexities of Crimmins’ research, but GBONews asked for her response to Emanuel’s citation of her work as a main scientific premise of his essay.
In a brief e-mail Crimmins replied, “I spoke with him once for about a minute. As I said to the ‘fact checker’ from the magazine, I feel used. That was the sum total of my exchange with the lot of them.”
It’s not that Emanuel misstated her findings, in narrowly citing them. But anyone who has known of Crimmins’ work for years would have to doubt that she’d agree with Emanuel’s application of her research to an interpretation of inevitable human decay, not to mention his implication that science has forever been defeated. It seems so odd that this elevated man of science would take analyses of data sets as a resoundingly and hopelessly personal defeat.
This editor couldn’t help but think of Emanuel’s defeatism on reading yesterday’s New York Times report, “Finding Clues in Genes of ‘Exceptional Responders’” by Gina Kolata. Scientists now want to study people who previously helped, even cured, but pharmaceutical that otherwise failed in drug trials to understand better what their resilience can offer the rest of us. Are these responders among the “outliers” Emanuel insists have nothing much to offer?
Fear of Losing Control?
In a critical review of Emanuel’s protest against old age, Harris Meyer, a top editor at Modern Healthcare, further exposes fissures in the good doctor’s arguments. For one thing, Meyer, noting Emanuel’s claim that he does not advocate rationing health care services to elders, mentions that the eminent physician did support “age-based or quality-of-life-based rationing of scarce medical resources” in a 2009 Lancet article.
But more essentially, Meyer observes, “The strange thing about Emanuel’s essay is that he himself believes that getting old, sick and feeble is cause for depression, hopelessness and loss of dignity and control, and he sees no possible help for it. ‘Living too long… renders many of us… faltering and declining, a state that may not be worse than death but is nonetheless deprived… We are no longer remembered as vibrant and engaged but as feeble, ineffectual, even pathetic.’”
Meyer interviewed Barbara Coombs Lee, president of Compassion & Choices, who observed that Emanuel’s article focuses on his fear of losing dignity and control. She added, “He casts aspersions on other people because they fear losing dignity and control and he would deprive them of taking steps to prevent it.”
Coombs Lee told Meyer, “The fantasy he creates is that if you don’t avail yourself of life-prolonging treatment, your death will come relatively quickly, painlessly and gently. That’s not necessarily true.” Talk to any geriatric physician about whether arbitrary nontreatment of serious health conditions for a patient with, say, Alzheimer’s or Parkinson’s disease would ease the suffering and stress for both patient and family. Not likely for these deteriorating conditions.
Also, Emanuel’s pledge to rely only on “palliative care,” belies is failure to understand that palliative care—not terminal hospice treatment—involves controlling pain and stabilizing symptoms through appropriate application of both comfort care and medical intervention as needed for seriously ill people. The article shows that the man doesn’t grasp the essence of end-of-life care at all, much less have an appreciation of the therapeutic value of well-applied, individualized medical care in advanced years.
Playing Off Young Against Old
Emanuel contends that he does not wish to live beyond his ability to be creative and productive. ”We literally lose our creativity” with age, he insists, confusing brilliant flashes of youthful minds with the insights of mature thinking, such as those defined by the late visionary gerontologist, Gene Cohen, MD, in his book, The Mature Mind: The Positive Power of the Aging Brain (Basic Books, 2005). Emanuel simply dismisses the many examples elder genius as “outliers.” Such exceptionalism in old age, Emanuel tells us, is beyond the capacity for the “vast, vast” majority of us—as if the vast, unblessed majority equates the age old wish to “live long and prosper,” (thank you, Mr. Spok) with one’s ability to perform mental gymnastics.
Throughout his commentary, Emanuel plays off the interests of the young against those of the old. But to what end? Echoing previous media attacks against the boomer generation for wanting to live forever, he returns repeatedly to his derision of the “American immortal, once a vital figure in his or her profession and community, [who] is happy to cultivate avocational interests, to take up bird watching, bicycle riding, pottery, and the like.” It’s as if slowing down and taking in life is mere self-indulgence, risking one’s own burdensome decay at the potential expense of youth.
Conceding that an elder’s death is usually a “huge loss” for their children, Emanuel believes that for older people, lingering too long, leaving their children and grandchildren “with memories framed not by our vivacity but by our frailty is the ultimate tragedy.”
Emanuel laments, “When parents routinely live to 95, children must caretake into their own retirement.” Well, yes, in the U.S. health care system, that’s deeply troubling—as a public policy choice, though, not as a decision individuals can control in our ethical vacuum.
In our family, my grandmother was not one of the “annoying” or “destructive” Jewish grandmother’s Emanuel conjures up in his sagging image of elderhood. She had eight more wonderful years following implantation of her pacemaker at 85, years treasured by her children, grandchildren and great-grandchildren. Her knees no longer allowed her into her beloved garden, but she was the gentle and very world-wise soul of our family.
Emanuel likely would disregard the likes of my grandmother as exceptional, but not if he understood the desire of the vast, vast majority of people, who understand that death – and all that comes with it – is, yes, hard, but part of our lives. No one wants to embrace pain and suffering. But neither do most really want it all to just go away and leave us to our pleasant recollections of, well, Zeke Emanuel’s notion of what’s “productive.”
He’s the Virtual Peter Pan
Emanuel urges the old to make a graceful exit: “We wish our children to remember us in our prime. Active, vigorous, engaged, animated, astute, enthusiastic, funny, warm, loving.” In doing so, however, he belies his bias. Think about it. The man who so ridicules the 99 percent of “American immortals,” is also the one who wants always to be remembered as the jovial companion to the young. A photo published with his article shows him with two nephews during their climb this summer of Mount Kilimanjaro, just as he says he’d like to be remembered.
Zeke Emanuel, it turns out, is not the “deadly doctor” as Palin and others dubbed him in the Obamacare debate. He never wants to grow up—he’s Uncle Cool. The hale fellow in perpetually well met in his Immortal selfie. Zeke Emanuel wants to be the virtual Peter Pan.
Emanuel’s failure to grasp the essence of long life exposes his underlying ageism. And that may well yield the results he seems to desire, dying at 75. You see, for those who live today in the United States to age 65, the average added life expectancy is to about 82. But according to well regarded and internationally corroborated research by Yale psychologist Becca Levy, PhD, people who hold a negative view of old age earlier in life die on average about 7.5 years earlier than those with a positive view of aging. That’s roughly the difference between 75 and 82. Emanuel may be imposing a self-fulfilling prophesy on himself.
Joking aside, what’s so sad about Emanuel’s public exposure of his dark view of longevity is that it practically defines the ageist undercurrent in so much contemporary thinking in American media and entertainment. It’s the anti-aging reinforcement that Levy’s research reflects, and even more troubling in public policy proposals to cut Social Security and Medicare in the cause of deficit reduction for future generations, as if our grandchildren won’t grow old.
It always amazes me to hear of brilliant people, “ethicists” no less, individuals far more accomplished than I could ever be, who confuse the convolutions of intellectual exercise with any real presence of mind. Reading Zeke Emanuel’s essay, I was reminded of a favorite quote by the 17th century philosopher René Descartes. Here it is in its entirety:
The greatest minds, as they are capable of the highest excellences, are open likewise to the greatest aberrations; and those who travel very slowly may yet make far greater progress, provided they keep always to the straight road, than those who, while they run, forsake it.
–From “Discourse on the Method of Rightly Conducting the Reason, and Seeking Truth in the Sciences”
*Article updated Oct. 12, 5:17 p.m. Pacific.
4. GEN BEATLES NEWS
***The Caregivers: A Support Group’s Stories of Slow Loss, Courage, and Love (Scribner), published earlier this year is scheduled for paperback release in April, reports author Nell Lake. www.nelllake.com. Starting in 2010, Lake began what became a two-year process of sitting in on weekly meetings of a local hospital’s caregivers support group. Among the members of the circle who opened their lives to her were Penny, a botanist in her 50s, caring for her aging mother; Daniel, a survivor of Nazi Germany who tending to the needs of his ailing wife; and William, whose wife suffers from Alzheimer’s. The Boston Globe glowed, “Lake writes about these people with such warmth and vividness that they feel as memorable as our favorite fictional characters.” Journalists can obtain a press review copy and media kit on the book from Lauren Lavelle, Lavelle@simonandschuster.com; 212-632-4952.
Lake will be speaking Oct. 18, 11:15 a.m., on a panel titled ““Pen in the Sickroom: Getting the Illness/Caretaking Experience on Paper,” at the WriteAngles Conference, at Mt. Holyoke College, South Hadley, Mass. Then on Nov. 15, 2014, 4 p.m., she’ll do a local reading at the Sandisfield Arts Center in Sandisfield, Mass.To discuss the book with Lake, e-mail her at nell.lake@verizon.net.
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The Journalists Network on Generations (JNG), founded in 1993, publishes Generations Beat Online with in-kind support from New America Media (NAM). JNG provides information and networking opportunities for journalists covering generational issues, but not those representing services, products or lobbying agendas. NAM is an online, nonprofit news service reaching 3,000 ethnic media outlets in the United States. GBO News readers are invited to visit the NAM website, and click on the Ethnic Elders section logo on the right side. Opinions expressed in GBO do not represent those of NAM. Copyright 2014, JNG. For more information contact GBO Editor Paul Kleyman.
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Brent Green
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Brent Green
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Lynette Evans