The government reversal on end of life planning

After all the ridiculous fear-mongering about “death panels,” Congress dropped a proposal to encourage end-of-life planning from the health reform legislation passed last March.

But the administration had in fact quietly included reimbursing doctors for end-of-life counseling along with a host of new Medicare regulations. The provision, which authorizes payment for “voluntary advance care planning,” went into effect on Jan. 1.

Four days later, there was a complete reversal of that decision. According to an unnamed official in the Obama administration, the provision was removed from the new Medicare regulations because of a “mix-up”; “the advance care planning component wasn’t included in a proposed rule offered for public comment last summer,” the official tells the New York Times. Instead, the rule was mistakenly put into the final regulations in November by Donald Berwick, the new head of the Centers for Medicare and Medicaid Services. But despite the administration’s attempts to make Berwick the fall guy and to blame the reversal on a procedural mix-up, it’s more likely that other forces—namely politics—are the real reason for the government’s very public back-down on end-of-life planning.

Although the regulation was “quietly” introduced in November, the news broke early this week that “voluntary advance care planning” would now be reimbursed as part of a yearly preventive care visit for seniors. This planning involves a discussion between a primary care doctor and patient (usually elderly or critically ill) that begins with a simple question: “Would you like to talk about advance care planning?” (thus the “voluntary” nature of the discussion). If the patient says no, that is the end of the discussion. But more likely, the patient will appreciate the opportunity to discuss his or her preferences for end-of-life care options that may include a range of personal choices including “do everything possible to keep me alive” to “keep me comfortable, but I want no heroic measures.”

Where supporters of advance care planning see a valuable opportunity to empower patients and improve the quality of their last days or months, opponents like Marc Siegel, internist and regular medical commentator for Fox News and other media organizations, sees the Medicare regulation as “the government incentivizing” these discussions “as a way of advancing their own agenda, which clearly is decreasing end-of-life care.”

Siegel may be right that the government is interested in decreasing spending during the last few months of life—a figure that stands at an astounding $55 billion just for doctors’ and hospital bills connected to the last two months of patients’ lives. But the truth is that cutting this cost would not only save the government money, it would also vastly improve the quality of those last two months for many critically ill patients.

Last year, a report in the Archives of Internal Medicine found that if half of the estimated 566,000 American adult cancer patients who died in 2008 had end-of-life discussions with their doctors, the projected savings would conservatively add up to $77 million. The report also found that one third of expenses in the last year of life are spent in the final month, with aggressive treatments in the final month accounting for 80 percent of those costs.

All that aggressive treatment—which more often than not includes painful medical interventions and grueling side-effects—is actually doing more harm than good, according to the report. “Despite physicians’ concerns that patients may experience psychological harm due to end-of-life discussions, we found no evidence that they were significantly associated with increased emotional distress or psychiatric disorders,” write the researchers. “Instead, the worst outcomes were seen in patients who did not report having these conversations. This group received significantly more aggressive medical care in their final week of life, which was associated with worse patient quality of life near death.” The take-away from this and many other studies: Terminally ill patients who talk over end-of-life treatments with their doctors spend less money, live just as long, but die more peacefully than those receiving aggressive care.

Why are we finding ourselves back in the “death panel” morass? The issue seemed to have moved offstage in recent months, and perhaps Obama thought including reimbursement for end-of-life planning in the hundreds of new Medicare rules would be uncontroversial. But that would be underestimating the media forces that are all too ready to bring accusations of rationing and “pulling the plug on Granny” back to life. Clearly, the administration now feels that including reimbursement for voluntary end-of-life planning discussions in Medicare benefits will only make advancing health reform more contentious in the face of the new Conservative majority in the House whose stated goal is to repeal the legislation.

This is short-sighted and infuriating to those of us interested in real health reform for a host of reasons. Here at Health Beat we have made the case for advance planning and end-of-life discussions many times. Berwick is a staunch advocate, calling unwanted procedures in terminal illness “a form of assault.” He adds, “In economic terms, it is waste. Several techniques, including advance directives and involvement of patients and families in decision-making, have been shown to reduce inappropriate care at the end of life, leading to both lower cost and more humane care.”

So what happened to that resolve? Before the administration’s reversal, Merrill Goozner, writing on his blog GoozNews puts the blame for the (then predicted) debacle squarely on the administration. “It would have been better if the new leadership at the Centers for Medicare and Medicaid Services used adoption of this new rule to educate the public about the importance of developing end-of-life directives, while simultaneously stressing that such actions are totally voluntary. Instead, CMS chief Donald Berwick snuck it into a rule that no one reads. If this winds up becoming the next political football for opponents of health care reform, reformers like Berwick will have no one but themselves to blame.”

For better or worse, the football has now been punted out-of-bounds. Perhaps it would have been better for the administration to openly campaign and promote the idea of advance directives before including the rule in the new Medicare regulations. But they tried that last year when the battle over passing the Patient Protection and Affordable Care Act brewed in Congress. The attacks by Palin and her cohorts that include the Right-to-Life faction, religious conservatives and some doctors who clearly profit monetarily from the testing, interventions and futile treatments employed during that last scramble in the month or two before death, were deafening and confused many Americans. Advance planning became synonymous with rationing.

The truth is, rationing of a far more insidious type is already taking place. Some 50 million Americans remain uninsured and are unable to access needed care. Another 25 million are under-insured; covered by bare-bones insurance policies that require patients to pay high deductibles out-of-pocket, and limit coverage to a few thousand dollars. Norman Ornstein, a resident scholar at the American Enterprise Institute writes in the Washington Post that “death panels,” do in fact exist: not as part of the Affordable Health Care Act but “from Republican administrations in states such as Arizona and Indiana,” that have stopped covering organ transplants and some “experimental” but life-saving surgeries in Medicaid patients.  Faced with souring budget deficits and an increase in Medicaid rolls, “[s]tates have to react, and one solution to their constraints is rationing care,” writes Ornstein.

Berwick understands that health care costs must be reigned in; and that includes making decisions about which services, treatments, tests and drugs are really necessary. “The decision is not whether or not we will ration care—the decision is whether we will ration with our eyes open,” he has said. End-of-life counseling is a compassionate service that not only saves money, but also improves the quality of life for dying patients. Removing reimbursement for counseling from Medicare regulations is a purely political move—perhaps designed to increase bipartisan support for health reform legislation. Most likely, it will have little effect on the loud calls for repeal and the continued misinformation campaign about “death panels.” If the administration can promote a forceful, yet meaningful and intelligent discussion of advanced planning in the months ahead, perhaps the Medicare provision can be added back—prominently, this time—to the new regulations.

Naomi Freundlich is a senior research associate of The Century Foundation who blogs at
Health Beat, where this post originally appeared.

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  • doc99

    NY State is worse – NY State has a penalty fine levied should a doctor not give the “EOL” discussion. Funny, in Med School I was told by an older Professor never” to tell a man when he is going to die because he might live to pee on your grave.”

  • ninguem

    The CPT codes 99408 and 99409, the behavior change intervention codes for alcohol and substance abuse.

    Basically, the time spent to inquire into a patient’s substance abuse history, certain psychological screening tests such as “AUDIT” (alcohol) and “DAST” (drug use).

    AAFP and various medical and primary care organizations, all made a big deal about the great work they did helping doctors get paid for spending the extra time counseling patients about drug and alcohol abuse. That was back in 2008.

    Looks like, three years later, the reimbursement will be stopped. Insurances will consider this part of the office visit.

    It will revert back to…… why do this extra work and not be paid. Docs will be sick and tired of banging their heads against the wall. So much easier to deal with sore throats.

    The usual tut-tut clucking classes will prattle on about how terrible doctors are about their pet cause, diagnosing depression, substance abuse, domestic abuse. All the while refusing to pay the docs for their effort.

    My medical practice includes a lot of medical pain management. As part of medical pain management, you will run into people who have a pain problem as well as a drug problem. The drug problem is starting to become bigger than the pain problem. I have to inquire into this, deeper than the superficial “I’m fine” remarks. I bill those codes. I used to get paid for the effort. I’m getting notice that this will stop this month.

    Like many other doctors, I’m sick and tired of banging my head against the wall.

    My point…….I really don’t care about the “death panel” fight. Sure as night follows day, any reimbursement for the “end of life” planning will disappear in a couple years, as soon as attention is directed elsewhere.

    Same as the payment for substance abuse screening.

  • Dr Sam Girgis

    End of life planning is an important part of medicine… in fact there is a whole field dedicated to it – Palliative Care Medicine. The government needs to re-evaluate their view of end of life care as it is integral to patient care and a needed entity.

    Dr Sam Girgis

  • The Scrivener

    I’m totally bewildered by the conservative position on this. Do they actually think people are going to live forever? Have they ever seen or heard testimony from either the physician or family POV as to the reality of aggressive medical care? (Congress, I learned during a summer internship, responds much better to anecdotes than to data.)

    Perhaps physicians and the AMA should reframe this as a “withholding information” issue that violates patient autonomy. That might get us out of the rationing rut.

  • Stav

    It is so important that we, as a family, have important discussions about health and death issues, no matter how unpleasant it is. Visiting Nurse Service of New York blogger and RN Amy Dixon Drouin wrote about having “The Talk” with her mother which gives such great insight. Check out her piece at and her follow up piece What if “The Talk” Isn’t So Easy?

  • Molly Ciliberti, RN

    Amazing that those same Republicans who feared death panels now are more than willing to let grandma die by privatizing Medicare and giving her a $15K voucher to cover all of her medical costs per year knowing she has multiple pre-existing conditions and no health insurance company would touch her with a ten foot pole. We still need universal healthcare just like Rand Paul, Paul Ryan and John Boehner have, nothing more or less. They are the ultimate hypocrites!

  • Beth Havey@Boomer Highway

    Good post, Molly. Addressing the morass is an individual thing at this point–when last week I had to talk with my 95 year old mother’s anesthesiologist to make sure that he would let he go if she coded during surgery on two hip fractures. As a nurse and a loving daughter, I acknowledge that my mother is nearing the end of her life. She has debilitating dementia. The hospital, social worker and physicians worked with me and we came to an agreement. My mother survived the surgery.

    I think politicians should have to stand at the bedside for a month or more and witness all forms of illness, disease and complicated medical issues. Then people like Grassley wouldn’t gum up the works with one quick sentence.