This piece is cross-posted in cooperation with The Nation.
Earlier this month, a regulation to provide Medicare coverage for advance care planning counseling—that is, offer reimbursement to doctors for time spent talking to patients about end-of-life care—was abandoned… for the second time.
Section 1233 of the Patient Protection and Affordable Care Act (PPACA) died a first death in the summer of 2009 in the debate over healthcare reform, during which healthcare opponents characterized the provision as a call for government-run “death panels.” Former Lieutenant Governor of New York State Betsy McCaughey, who consulted with Philip Morris while working on the hit piece against the Clinton healthcare plan “No Exit,” coined the “death panel” moniker; Sarah Palin popularized it. Then John Boehner, at the time the House minority leader, claimed that the provision would lead the country down “a treacherous path toward government-encouraged euthanasia.” Fox & Friends repeated the “death panel” meme dozens of times, and soon, the provision was stripped from the healthcare bill.
But last November, the Obama administration quietly inserted it into Medicare’s annual regulations—after the customary public review period. The New York Times‘s Robert Pear broke the news on Christmas Day that end-of-life counseling was to be covered by Medicare. Immediately, right-wing think tanks, some with legal cases against the healthcare bill, leveraged the “death panel” rhetoric to bolster their arguments. While “prolife” blogs spread the news alongside accusations that the regulation would further endanger the “sanctity of life,” much of mainstream media pushed back at reemergence of what Politifact called “the biggest lie of 2009.” On Fox, guest host Tucker Carlson said that the regulation would convince Americans to “forego aggressive life-sustaining treatment,” but was challenged by another correspondent. Nonetheless, the Obama administration, blaming procedural irregularities, dropped the regulation only three days after it went into effect, but it’s clear political considerations played a role.
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Opponents of the healthcare bill got the White House running scared by spreading the “death panel” meme from conservative legal groups to Fox to right-wing blogs and back again, both after the Affordable Care Act passed and after Christmas. But they weren’t building a messaging chain from scratch. Instead, they worked the same network that has been mobilized since the 1970s to fight legal abortion. For the past decade, those same religious organizations have begun working to limit treatment choices for those facing the end of their lives, a development that increasingly impedes meaningful healthcare, and resigns countless elders—including millions of aging Baby Boomers—to “healthcare” that does little for, or even damage to, their quality of life.
A host of anti-abortion groups denounced the end of life counseling regulation, including Operation Rescue‘s Troy Newman and Janice Crouse of the Beverly LaHaye Institute at Concerned Women for America. Family Research Council‘s director of Congressional affairs, David Christensen, told The Christian Science Monitor, “We’re concerned this [the regulation] could be misused, especially in a state like Oregon that sees mercy killing as a legitimate medical service.” Three days after Pear’s story, Mathew Staver, chairman of Liberty University’s Liberty Counsel, a conservative legal organization (think “Choose Life” license plates case), said, “When you remove the sanctity of life from the equation and place health care under the control of government bureaucrats, you end up with increased costs, decreased care, and death panels.” Judie Brown, the president of American Life League, gave a succinct summary of the “prolife” conflation of end of life care with abortion: “Nothing good can come of this. This will affect everybody’s parents and grandparents and preborn babies, and it will not affect anybody for the good.”
About 80 percent of Americans wish to die at home, yet 80 percent die in institutions, because the default mode of medical care in the United States is to “do everything,” as Thaddeus Pope, law professor at Widener University, describes it. For the past fifty years, medicine has focused on curing illnesses and ailments but not on guiding patients through the dying process. So terminal patients are now frequently given rounds of treatment long after they’ve been found ineffective simply because doctors fear “giving up.” Aggressive intervention enables doctors and patients to deny the inevitability of death and prevents them from planning for the process of dying.
Particularly for patients over 65, aggressive treatment and their side effects can be more debilitating than what they’re intended to cure. From CPR (reliable statistics don’t exist, but most studies suggest the procedure saves lives less than a quarter of the times it is performed—and often breaks bones) to artificial nutrition and hydration (which employs a stomach tube for feeding even though loss of hunger and the inability to ingest are natural symptoms of the dying process), treatments that don’t actually improve patients’ lives but provide a significant revenue to doctors, hospitals and medical manufacturers are common practice in our medical system. Yet patients often don’t know that they can refuse treatments or decide where to die. Providing insurance coverage for discussions about end-of-life care would help restore choice to those facing a path of unwanted treatment and would reduce the cost of healthcare. It’s a win-win prospect, but that’s the rub: Republicans and their “prolife” allies have characterized any attempts to reform “aggressive care” as cost-cutting attacks on the most vulnerable.
The terms themselves are confusing. “End-of-life care” is often referred to as advance care planning, the process by which a patient talks to their doctor and family about how they wish to die and decides which medical interventions, like CPR, they do or do not want. The advance care planning the Obama administration attempted to include in Medicare is entirely distinct from Death with Dignity (DWD), though both come from a commitment to patient choice and autonomy. State “Death with Dignity” laws allow a patient who has been diagnosed with less than six months to live to ask for lethal medicine from a doctor who cannot be prosecuted. In the United States proponents prefer the terms DWD or aid in dying, while opponents refer to “euthanasia.” Advocates for the availability of good end-of-life care and advance care planning—there is no umbrella term—argue that patients have a right to be fully informed of care options and to accept or deny treatments. End of life counseling simply involves informing patients of their care options (which, if the patient lives in Oregon, Washington or Montana includes Death with Dignity) and helping them to plan accordingly. Since the death of Terri Schiavo in 2005, antichoice groups, the Catholic Church and their denominational and legal allies have raised alarm about “euthanasia” on their well-organized and -funded platform.
At the Pennsylvania Pro-Life Federation annual meeting in 2009, Bobby Schindler, brother of Terri Schiavo and head of the Terri Schindler Schiavo Foundation (recently renamed the Terri Schiavo Life & Hope Network), spoke alongside other anti-abortion luminaries like former Kansas Attorney General Phill Kline. Schindler has styled himself as an advocate for the disabled, reflecting a trend among “prolife” groups who have expanded their definition of “innocent life” to include the disabled, elders, the dying, as well as the “unborn” (or “pre-born,” as anti-abortion groups have begun to say). “Saying Terri was in a Persistent Vegetative State [a medical diagnosis for minimal or no brain function] was dehumanizing,” Schindler told the crowd, “like not using baby for the unborn. We’ve been primarily concerned with abortion but how many are being killed on a daily basis by euthanasia?”
The Pennsylvania Pro-Life Federation is far from the only antichoice group now also fighting patients’ choice at the end of life. The National Right to Life Committee (NRLC) has taken up opposition to health care reform and advance care planning with abandon; their Robert Powell Center for Medical Ethics, named for the disabled early vice president of NRLC, “serves as NRLC’s arm in fighting to protect the vulnerable born from both direct killing and denial of lifesaving medical treatment, food and fluids.” They’ve maintained a blog about end-of-life issues and healthcare reform since June of 2009. These groups have long held that the legalization of abortion has cheapened the value of life; in their eyes Death with Dignity does the same, and legitimizes their fear that the United States is on a “slippery slope” toward state-sanctioned killing of “innocent life” among us.
A collective American reticence to frankly discuss death enables organizations like the Terri Schiavo Life & Hope Network and NRLC to misinform the public about existing government programs like hospice, Medicare and other legal tools for the elderly, like advanced directives and medical proxies, which can provide more control over how they age and die. Combined with a paternalistic medical profession that’s only recently begun training new doctors on how to talk to patients about how to plan their end-of-life care and a Republican party dependent on the support of antichoice groups, “pro-life” groups have been able to fundamentally shape state and federal legislation.
Of course, even in the absence of this regulation, doctors and patients will continue to initiate conversations about end-of-life care—but not frequently enough to save uninformed seniors and terminal patients from painful and pointless treatments they don’t want. And not often enough to stem the crisis in healthcare financing aging Baby Boomers will bring.
When advocates of the Stupak-Pitts amendment to severely restrict abortion coverage took healthcare reform hostage, advocates for women’s health were reminded of the outsized ability “prolife” groups have to determine healthcare policy. The defeat of increased funding for end of life care should serve as a warning to all those concerned about autonomy over their own healthcare choices.