Advance Care Planning

Remember the Obamacare death panels? In 2009, during the heat of the legislative fight over enacting the Affordable Care Act (ACA), Governor Sarah Palin made the absurd claim that buried in the legislation was a provision whereby nameless bureaucrats would decide who was—and was not—worthy of health care. Other opponents of healthcare reform latched onto this false claim then stoked the fears of the aged and disabled with predictions of mandatory counseling sessions on “how to end their life sooner.” Future House Speaker John Boehner declared that the law would lead us “down a treacherous path toward government-encouraged euthanasia.”

The death panel claim was a myth based on a deliberate misinterpretation of a provision of the ACA which expanded physician payment under Medicare for “voluntary advance care planning.” Ironically, encouraging physicians to discuss end-of-life planning with their patients had long been supported by thoughtful politicians on both sides of the political divide. It was President Reagan’s Commission on Bioethics that first advocated on a national level for the right of patients to make decisions about their health care. And it was President George H. W. Bush who signed the Patient Self-Determination Act of 1990, which requires hospitals, nursing homes, and home health agencies to provide information about advance care directives to patients at the time of admission.

Despite the absurdity of the death panel gambit and the ease of refuting it by simply reading the bill (which was available on the internet), the eventual outcome only served to prove Swift’s adage: “Falsehood flies, and the truth comes limping after it.” The advance care planning provision was struck from the bill, allowing the ACA to “limp” forward. Unfortunately, tales of death panels and the unjustified stigma they attach to end-of-life planning continue to “fly” to this day.

The attempt to demonize end-of-life planning as a tool to derail the ACA marked a low point in the history of health care policy discourse. It was also an embarrassing reminder that our society has an irrational aversion to talking about death—and it’s not just that we don’t want to talk about it. Historically, we have done a pretty poor job of taking care of patients at the end of life.

The landmark SUPPORT study cast light on the poor quality of care received by patients with life-threatening illnesses. It showed that less than half of physicians knew whether their critically ill patients wanted to avoid CPR, and 46 percent of the time a DNR order was written only within the last 48 hours of life. Even more disappointing was the finding that interventions designed to improve patient-physician communication had no effect on improving patient care or outcomes. These findings showed that “greater individual and societal commitment and more proactive and forceful measures” would be needed to improve end-of-life care.

Waiting until the end of life to discuss end-of-life care is clearly a failed strategy. Recognizing these deficiencies, the Institute of Medicine in its 2014 report recommended a strategy which should be familiar to all family physicians: Patient-centered, family-oriented comprehensive care. It also recommended normalizing conversations about death and dying, and providing financial incentives for providing advance care planning.

Even though coverage for advance care planning was removed from the final version of the ACA, the Centers for Medicare and Medicaid Services (CMS) continued to push for adding this service. In 2013, a bipartisan bill was introduced in the Senate to restore coverage for advance care planning. Unfortunately, the bill did not become law. Finally, in November of last year, with little fanfare, and practically no opposing voices, CMS added coverage for advance care planning to the Physician Fee Schedule.

CMS began paying for advance care planning as of January 1, 2016. There are two new CPT codes for this service: 99497 for the first 30 minutes, and 99498 for each additional 30 minutes of face-to-face counseling. The AAFP has been an active participant in clarifying the details of this service, and was instrumental in developing the “Frequently Asked Questions” document on this new service that is available on the CMS website.

Getting paid to provide advance care planning is a tremendous improvement, but physicians also need to raise their game. A recent survey suggests that physicians might not be ready to deal with the avalanche of baby boomers who are approaching the final years of life. The survey found that only 14 percent of physicians have billed Medicare for ACP services, less than one-third reported any training in end-of life discussions, and less than half had discussed end-of-life care with their own physician. From the patient perspective, 9 out of 10 patients want their doctor to talk to them about end-of-life issues, but only 17% say they have had this conversation.

Recognizing the deficiencies of end-of-life care and preserving the right of patients to make informed decisions has been a 40-year journey that first received public attention with the Karen Ann Quinlan case during the mid-1970s. Fortunately, it has been a journey marked by steady progress (with the exception of the despicable death panel diversion).

There is now bipartisan support for paying primary care physicians for providing advance care planning services. In our current polarized political environment, when both sides agree on something, it’s probably the right thing to do. Our patients are ready to talk about end-of-life care. Now it’s up to us to make advance care planning work for our patients and their families.