“It was the richest of times,” writes journalist Robert Lipsyte in his 1998 book In the Country of Illness: Comfort and Advice for the Journey. He’s speaking about the impending death of his exwife, Margie, who was dying of cancer. Lipsyte’s memoir vividly describes the remarkable transitions possible for patient, family, and friends when good end-of-life care is available. He explains in his son’s words: “There was a great energy and love in that room, and it was emanating from her, and flowing through us, and gave us the strength to overcome our own fears, our own weaknesses, and stay, and be with her.”
That’s the death I want, I declared to myself when I read the book many years ago. But could I have it?
When I was editor in chief of the American Journal of Nursing, beginning in 2002, we published a series of peer-reviewed articles on palliative and end-of-life care, supported by a grant from the Robert Wood Johnson Foundation. We tried to work with journalists to highlight articles we thought would benefit the public, but a public relations specialist told me, “No one wants to read about death. The women’s magazines won’t touch this stuff and neither will most media.” After concerted efforts of physicians, nurses, and others who have dedicated their lives to improving care at the end of life, journalists such as New York Times columnist Jane Brody began to write about how we die.
But the rhetoric of “death panels” during the debates about the Affordable Care Act (ACA) shut down public conversations about how our health care system can better support choices in how we die.
During these debates in 2009, a Senate version of the legislation included language that would have paid physicians to have periodic conversations with patients about their preferences for advanced illness care. Former vice presidential candidate and governor of Alaska, Sarah Palin, claimed in a statement that this was evidence the government would use death panels to decide who would live and die—“based on a subjective judgment of their ‘level of productivity in society’”—a claim declared the “2009 Lie of the Year” by PolitiFact, a project of the Tampa Bay Times and partner news organizations. Just before he became House speaker, John Boehner (R, Ohio) said that the provision could be a slide “down a treacherous path toward government-encouraged euthanasia.”
In fact, the following year, President Obama tried to advance the same payment policy on end-of-life counseling through Medicare regulations that would go into effect on January 1, 2011. But after Robert Pear broke this news in the New York Times on December 25, 2010, the “death panel” rhetoric reemerged. Then, on January 4, 2011, Pear wrote that the president had withdrawn the regulation right after it had gone into effect. Shortly thereafter, I was working with the American Academy of Nursing on an event in Washington, DC, to restore public conversations on end-of-life decision making and care. We sought support from a number of health-related foundations. One told us we shouldn’t touch the issue until after the 2012 elections because it could trigger a political backlash. I’m glad we ignored this foundation’s advice.
Last week, the death panel rhetoric resurfaced in a way that promises to continue beyond 2012. It now is being used to call for overturning the Independent Payment Advisory Board (IPAB), which is written into the ACA as a way of controlling health care costs. In an interview on Fox News, Palin said the “death panel” is the IPAB: it “will tell you whether your level of productivity in society is worthy of receiving the rationed care that will be the result of Obamacare.” She claimed that it would ration care, even though the law states that the recommendations can’t involve rationing. (Of course, the United States already has rationed care, as any clinician can tell you.)
Taking effect in 2014, the IPAB will consist of 15 experts making recommendations to Congress on reducing care costs if they exceed a target. These recommendations will be automatically implemented unless Congress and the President move forward with their own approaches to reducing the increase in costs. So it forces actions to control health care costs if the ACA doesn’t achieve spending targets. While clinicians and hospitals may fear further reductions in Medicare payments, economist Paul Krugman pointed out that controlling Medicare spending is one of the primary aims of the Republican Party and, indeed, a mandate for the nation. But Krugman used the expression “death panels” in trying to be “deliberately provocative” in discussing how to reign in health care costs. He shouldn’t have: the phrase should always signal an attempt to intimidate rather than illuminate. Krugman later explained
What I meant is that… health care costs will have to be controlled, which will surely require having Medicare and Medicaid decide what they’re willing to pay for—not really death panels, of course, but consideration of medical effectiveness and, at some point, how much we’re willing to spend for extreme care.
There’s a political adage, “He who controls the language controls the debate.” Political campaigns are mostly about 2 things: controlling the message and getting that message out. In a Kaiser Family Foundation poll conducted in March, 36% of those surveyed said that the ACA would “allow a government panel to make decisions about end-of-life care for people on Medicare.” Another 20% said they didn’t know.
Nurse Theresa Brown recently wrote in the New York Times about an uninsured patient so concerned about paying for his cancer treatments that he told her he was sorry there were no death panels. He deserves an alternative narrative, one that will ensure that he can make informed choices about advanced illness care and dying. I want that “richest of times” experience for him, for all patients, and for myself. Don’t you?
About the author: Diana J. Mason, PhD, RN, is the Rudin Professor of Nursing and Co-Director of the Center for Health, Media, and Policy at the Hunter College, City University of New York, and Fellow and President-elect of the American Academy of Nursing.
About The JAMA Forum: To provide ongoing coverage throughout this election year, JAMA has assembled a team of leading scholars, including health economists, health policy experts, and legal scholars, to provide insight about the political aspects of health care. Each JAMA Forum entry expresses the opinions of the author but does not necessarily reflect the views or opinions of JAMA, the editorial staff, or the American Medical Association. More information is available here and here.
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