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Let’s Talk About ‘Death Panels’

It’s time to revisit a good idea that was distorted by demagoguery.

By HAROLD POLLACK

July 06, 2014

Can we revisit those “death panels” now? Last summer, my 84-year-old dad faced a frightening kidney cancer. It turned out to be readily treatable. He got excellent care at Brigham and Women’s Hospital. Our family came together to help him with his surgery. He’s back to emailing impossible questions about general relativity and string theory.

Still, we had frank conversations about unsettling possibilities that did not come to pass. Some concerned his preferences regarding end-of-life care. We talked about other tough things, too: money issues, how my 82-year-old step-mother would meet both of their needs if he became chronically debilitated, and more. I’m sure my dad had private talks with his doctor, too.

Death and physical infirmity intrude on every human life. It’s important to frankly discuss these matters—lovingly, honestly, with particularity and without euphemism—long before you’re holding your semi-conscious loved-one’s hand in the ICU. People also need to discuss these issues with the doctor who knows them best.

There’s nothing particularly costly here. A health-care system that promiscuously reimburses proton beam cancer therapies can finance a 45-minute conversation about your advanced-care directives. Some private insurers and state Medicaid programs already reimburse such consultations. So it’s no surprise that the Illinois medical society, geriatricians, policymakers and advocacy groups are quietly pushing both private insurers and Medicare to reconsider the idea, this time through regulatory and administrative actions rather than new legislation. The American Medical Association—which plays an outsized role in determining how doctors are compensated—will also submit information to the Centers for Medicare and Medicaid Services concerning the mechanics of reimbursing such services.

There’s nothing inherently ideological about these services, either. Donald Taylor of Duke University, one of the nation’s leading palliative care policy experts, notes that “Prior to the Affordable Care Act, hospice policy and discussions around advanced directives and the like tended to have broad bipartisan support.” Indeed, it was a Republican senator, Johnny Isakson of Georgia, who co-sponsored 2007’s Medicare End-of-Life Planning Act to expand coverage for voluntary care counseling in cases of serious illness. A very similar provision was included in the House version of what became the Affordable Care Act. Section 1223 would have paid physicians for discussing advanced-care planning with their patients.

Then came the “death panel” bomb. I still can’t quite believe that occurred. Sarah Palin, Michele Bachmann and Betsey McCaughey, a pundit whose health-care writings have been widely discredited, grotesquely distorted the debate. In Palin’s memorable words:

The America I know and love is not one in which my parents or my baby with Down Syndrome will have to stand in front of Obama’s “death panel” so his bureaucrats can decide, based on a subjective judgment of their “level of productivity in society,” whether they are worthy of health care. Such a system is downright evil.

It’s disgraceful that a national figure would peddle malicious nonsense that earned Politifact’s “Lie of the Year” award. It was more than a little pathetic, too. Politicians across the political spectrum have made important contributions in the domain of intellectual disability. When Palin’s life was unexpectedly touched in this way, I had hoped that she would parlay her charisma and national platform to accomplish something worthy.

She chose a different path. To my knowledge, Palin has played no sustained or substantial role in any disability policy issue. She quit her job as governor to hit the right-wing mashed potato circuit. The “death panel” episode itself sealed her transition from intriguing newcomer on the national scene to embarrassing fringe figure. She’s garnered some lucrative media deals. But her reputation has suffered heavily.

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Americans with most reason to worry about supposed death panels—individuals with disabilities or costly chronic conditions—rank among the most vocal supporters of health reform. The Arc, America’s leading advocacy organization for people living with intellectual disabilities, concluded in a 2012 report: “Numerous ACA provisions related to both acute care and long term services and supports hold great promise for improving the health and well-being of people with disabilities.”

Ironically, the ACA specifically (and rather foolishly) forbids considerations of cost-effectiveness and quality-of-life in a wide range of coverage decisions. Moreover, the experts who do want to aggressively deploy cost-effectiveness research in coverage decisions are much more passionate about needless endoscopies, back surgeries and CT scans than they are about end-of-life care. An Institute of Medicine report identified “priority topics” in which to apply comparative effectiveness research. None of their top 25 priorities were in end-of-life care.

Still, Palin, Bachmann and McCaughey’s rhetoric had its desired effect. These counseling provisions were removed from the ACA. Even as reasonable conservatives were embarrassed by the know-nothing tenor of this debate, Palin, Bachmann and McCaughey dragged comparative effectiveness research (CER) into the broader partisan knife-fight over health reform.

Conservative politicians, health advocates and policy wonks scrambled to catch up. Some did so crudely. Sen. Chuck Grassley, with whom Democrats were seriously trying to negotiate—and who surely knew better—warned of a “government-run plan to decide when to pull the plug on grandma.” Others tried to link Palin’s comments with more serious concerns regarding implicit pressures to limit or to ration care.

Avik Roy, the conservative health policy wonk (and former Romney adviser), probably presented the clearest substantive arguments against government involvement in this domain. As he recently commented to me over email:

End-of-life care should be an apolitical issue, but people are acutely sensitive to the concern that the government has a conflict of interest in this area, because the government has a financial incentive to encourage people to “pull the plug on granny,” regardless of whether or not that is consistent with granny’s, or her family’s wishes.

These are legitimate concerns, and as Roy observes, aspects of the British experience lend them credence. Of course, the same concerns apply to any third-party payment system independent of health reform. Indeed, these conflicts of interest have frequently arisen for private insurers. That’s one reason the ACA includes regulatory protections such as the creation of an essential health-benefit package and the elimination of annual and lifetime coverage limits for costly conditions.

These are also legitimate concerns in Medicaid. Recent efforts by Republican governors to cut services for the elderly and disabled form an ironic counterpoint to the death-panel rhetoric. See, for example, the tragedies associated with Arizona’s self-immolating decision to cut Medicaid funding for organ transplants. See also South Carolina’s cuts to hospice and meals-on-wheels programs, which were later reversed.

Roy treads into some intricate terrain himself:

Ideally, what you need to do is give seniors an economic incentive to control their own end-of-life care, by allowing them to pass on any savings to their kin. In that way, the choice is theirs rather than the government’s.

I’m personally uncomfortable with this. So many people feel tremendous fear and shame regarding the possibility that they might become a burden on their children or on others. I fear that explicit incentives provide a blunt invitation to forego valuable care.

Many conservatives drew connections to the real or imagined rationing practiced by the British National Health Service. At times, Britain goes further to limit care than most Americans are willing to go, though the extent of British rationing is far narrower than Americans believe.

Given the huge differences in organization and overall spending, sweeping comparisons between our system and Britain’s are always perilous, even when these are done with great care. Less care was taken when an editorial in Investor’s Business Daily scored perhapsthe greatest own-goal in the history of health policy. The paper opines:

People such as scientist Stephen Hawking wouldn’t have a chance in the U.K., where the National Health Service would say the life of this brilliant man, because of his physical handicaps, is essentially worthless.

The subsequent correction was terrific, too. IBD’s link to the editorial quietly removed the self-refuting passage, adding this “Editor’s note:”

This version corrects the original editorial which implied that physicist Stephen Hawking, a professor at the University of Cambridge, did not live in the UK.

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The term “death panel,” like its rhetorical relative “swift boating,” has come to denote the sort of dishonest take-no-prisoners demagoguery associated with the paranoid right in American politics. Thinking Republicans are embarrassed by references to “death panels.” They certainly should be. Still, here we are. No one has really wanted to touch these issues since—with the almost singular exception of Oregon Rep. Earl Blumenauer, who dutifully introduces a bill on the subject every year—although virtually everyone in Washington understood what a travesty they had witnessed.

Ironically, insurers and fiscal conservatives long hoped that the tools of economic policy analysis and clinical outcomes research could play a helpful role in constraining wasteful expenditures. For precisely the conflicts of interest reasons noted by Avik Roy, private insurers command little public legitimacy to deny payment or reduce reimbursement—even when this is justified for ineffective or overly costly interventions. Health services researchers deploying rigorous and transparent analysis can play a very helpful role in this difficult area.

Unfortunately, in the polarized environment of health reform, these methods were suddenly framed as a tool of socialist central planning. Care counseling in cases of life-threatening or life-limiting illness suddenly became a tool of deliberate health-care rationing, an effort to abandon senior citizens and the disabled.

The “death panel” charge stuck because it tapped into the primeval fears of millions of Americans. It’s only human to worry that we might someday be abandoned when we are old and sick, and thus judged to be a social burden. Such worries run especially deep among senior citizens, who had the most reason to feel vulnerable, and who perceived that they had the least to gain from the ACA.

Seniors actually have much to gain from physician counseling on advanced-care directives and related matters. Most people wish to die at home rather than in some antiseptic intensive care unit. Most wish to leave clear directions to reduce the agony of their spouses and adult children trying to guess their preferences when making difficult decisions about pain management or invasive surgery. The elderly and those living with serious health conditions were the people most directly harmed when the pertinent provisions were removed from the final health-reform bill.

The Hartford Foundation’s Amy Berman, whose work often concerns the intersection of geriatrics and palliative care, has written widely on these matters. She bluntly describes a painful dilemma: “Everyone dies, but most don’t plan for it… The result is that people tend to have more aggressive care than they want, are treated in ways and settings they didn’t want. ”

Berman’s concerns aren’t entirely professional—she has stage IV cancer. As she told me in an email:

I would prefer to die at home. When I now longer have a good quality of life, I don’t want heroic measures taken to provide more, bad days. Thankfully I feel great, but I know what lies ahead. I have discussed my preferences with my oncologist. My mother is healthcare proxy and she is also very clear about what the care I want at the end of life….

Dr. William Dale expresses a similar perspective from the other side of the examining room table. In our university hospital, Dale is chief of section for geriatrics and palliative medicine. He also holds a doctorate in public policy. He’s treated legions of older patients who have been diagnosed with life-threatening or life-ending cancers. And he tells me:

People are very nervous about being given up on. Unfortunately, I think we give them that impression sometimes… To equate conversations about goals of care, end of life care and palliative care with the withdrawal of care is really misguided. But that’s what hits a nerve. People are genuinely nervous about that. That loss of hope, that fear of being given up on, is at the emotional core of this issue.

Many doctors reinforce these fears by equating palliative care with hospice, and by presenting both as the minimally decent parting gift our medical care system provides when there’s nothing anyone can really do. (Palliative care concerns specialized care for people with serious conditions. It seeks to improve patients’ quality of life by improving function and relieving symptoms, whatever the prognosis. Hospice is a program of care for people who face life-ending conditions. Medicare recipients are eligible for hospice benefits when they face terminal illness “and have six months or less to live if your illness runs its normal course.”)

End-of-life care is a painful domain for everyone: patients, their families, their doctors, too. The New Yorker’s Atul Gawande wrote a fantastically candid essay, “Letting Go,” concerning the human realities in this domain of care. Gawande noted that fewer than half of terminally ill patients within six months of the end of their life have any discussion about their priorities and goals regarding care management when their health worsens.

One particularly sad aspect of the story concerns the number of dying patients who felt abandoned by their doctors. Gawande asked one patient why she was in hospice. She replied: “The lung doctor and heart doctor said they couldn’t help me anymore.”

That’s inexcusable. As Dale puts it, “We’re always treating you.” There are so many ways to improve patients’ quality of life, even when one can no longer extend someone’s life or reverse the course of someone’s deadly cancer.

Ironically, studies of early palliative care for lung-cancer patients suggest that palliative care patients may live longer. Palliative care doctors seem quicker than other doctors to recognize when toxic chemotherapies begin to do more harm than good.

These challenges are easier to handle when patients and doctors have the time to develop real relationships and to formulate a coherent plan. Unfortunately, the time demands and organizational realities of modern medical care conspire against that. Physicians spend less time with individual patients, and are thus less likely to have important discussions about priorities in care. It’s much easier and quicker to recommend an intervention or to prescribe a medication than it is to persuade someone that this intervention or medication is unwise.

Physicians can bill Medicare Part B right now for discussions of these matters, as Duke’s Donald Taylor notes. But the pertinent evaluation and management codes don’t appear to pay enough to cover what must be done. Taylor emails: “A well-done conversation around these topics is often much longer than a normal office visit, may include many members of the care team, as well as family members.”

Under the current system, physicians can bill Medicare for aggressive imaging, procedures and chemotherapies treatments that may bring little patient benefit in advanced illness. Doctors and hospitals are far more handsomely rewarded for the placement of a feeding tube or a ventilator than they are for meeting with patients and families to determine whether these therapies are helpful or wise. As Dale puts it, “We’ve existed in a system that we reimburse for doing stuff rather than talking about things.” Attaching a prominent billing code for care consultations helps redress the built-in-bias, in which less-invasive therapy and close consultation with patients are under-rewarded.

Berman regards such care consultation as “a fundamental consumer right.”

I wouldn’t let a realtor pick my next house. The dealership won’t be choosing my car…. We deserve to be informed about our diagnosis and the likely course of our illness. We should be transparently provided with treatment options, costs and benefits. And we should have a structured conversation with a trained member of the health care team that elicits and documents our values and preferences related to the end of life. No one should be making decisions for us. If we aren’t involved in advance care planning we risk a bad and burdensome death.

Some are unjustifiably concerned that end-of-life planning might mean you could be steered away from high-cost care. All I know is that, without these conversations, you are 100% guaranteed to only get the care someone else chooses.

After the 2012 election, Republicans such as Michael Gerson and Peter Wehner called for a “Sister Souljah moment,” whereby GOP moderates confront extreme elements of their own party on matters ranging from climate change to immigration policy. I hope “death panels” make this list.

Henry Aaron, the distinguished economist, observes: “We pay doctors to take our blood pressure, to remove our appendixes, to replace our joints; to deny compensation for advice on our options in coping with terminal illness and with the anguish and pain that so often accompany it is cruel and inhumane.”

It’s past time to do something about that.

Harold Pollack teaches social service administration at the University of Chicago. A fellow of the Century Foundation, he’s a regular contributor to the Washington Post’s Wonkblog section and to healthinsurance.org

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OUT: “Death Panels” Are A Lie Invented By Sarah Palin. IN: Death Panels Are Good For You!

In his Politico piece calling for a revival of Obamacare’s original end-of-life-counseling provisions, Harold Pollack blames “Palin, Bachmann and McCaughey” for having “dragged comparative effectiveness research (CER) into the broader partisan knife-fight over health reform.” But of course the main person who dragged comparative effectiveness into the knife-fight was Barack Obama, expounding on red pills vs. blue pills to David Leonhardt in the NYT months before Palin’s “death panel” gibe (and doing it again in subsequent speeches and statements). … Obama also put cost saving through “comparative effectiveness’ squarely in the context of end-of-life decisions when he questioned whether his terminally ill grandmother should have been given a hip operation. (While Pollack says end-of-life treatment is not one of the top targets for savings, Obama says it’s a “huge driver of costs.”) And Obama made it clear he favored a centralized effort to at least nudge doctors into dropping some treatments — and not such a democratic effort either . . .

Why did this discussion have to be part of the debate on extending coverage to the uninsured and security to the insured? A: It didn’t. But that was Obama’s choice, not Palin’s. “The critics have said, you’re doing too much, you can’t do all this at once, Congress can’t digest everything. I just reject that,” he told Leonhardt. In this case — given Obama’s failure to sell voters on his cost-cutting, tough-choice-making ACA — it’s hard to say the critics weren’t right.

I could go on (Pollack has convenient fantasies about how wonderful it is for people to die at home, and about hospice care, which in my experience with actual patients in excellent Southern California facilities means precisely that your docs have given up on you and are now farming you out to lower-cost care provided by drive-by contractors.

Indeed.

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Thanks to Instapundit for that.

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Palin correctly called them what they were, long before anyone dared speak the truth

She was also right about Putin and Russia eyeing Ukraine's eastern territory.

Caribou Barbie... what might have been.