Reimagining advance care planning for patients with serious illness

- Kenny Lin, MD, MPH

It is difficult to overstate the damage done by the fictional political term "death panel," which claimed that a 2009 legislative proposal to pay physicians for providing counseling to Medicare patients about advance directives and end-of-life care options amounted to a group of federal bureaucrats deciding whether an older or disabled person would be permitted to live or die. Not until 2016 did the Centers for Medicare & Medicaid Services (CMS) create Current Procedural Terminology (CPT) codes that allowed billing for advance care planning services, and clinicians have been slow to use them. According to a recent study in JAMA Internal Medicine, only about 2% of Medicare fee-for-service beneficiaries age 65 years or older had advance care planning visits. As expected, geriatricians and palliative medicine specialists were more likely to use the codes than other physicians. Even so, two-thirds of hospice and palliative medicine specialists did not use the codes at all in 2017, which suggested that billing did not reflect actual counseling practices.

Other articles have documented the challenges of incorporating patients' values and preferences into care plans when they are already experiencing serious illness. An analysis of recorded clinician-family conferences about critically ill patients found that in more than half, "there was no deliberation about how to apply patients' values and preferences in the current clinical situation," and in 1 out of every 4 discussions, the patient's values and preferences were not even mentioned. Similarly, a medical oncologist reflected in Health Affairs about the care team's failure to manage expectations of a patient with advanced (and ultimately fatal) lung cancer who, "because she was looking for rescue," declined to discuss goals of care as an outpatient even as treatments proved ineffective and her health deteriorated:

I'm not sure how well we managed Wendy's care at the end of her life. On the one hand, she achieved her short-term goal of attending the family gathering. On the other hand, she spent nearly the entire last month of her life hospitalized. She died in an intensive care unit, intubated, on a ventilator, and unable to say goodbye to love ones. She was not enrolled in hospice. We don't know whether we met Wendy's goals of care because we never managed to define them.

Two editorials in the March 1 issue of AFP addressed how family physicians can prepare patients better for end-of-life decisions by "thinking about [advance care planning] as an iterative and integrative process," rather than as a document to be filled out and then filed away. Primary care teams can use the Serious Illness Conversation Guide to assess patients' understanding of their illness, explore what matters most to them, and communicate goals of care to family members and subspecialists. Lack of training and time constraints remain barriers, however. Innovative residency curricula on advance care planning, such as this medical-legal partnership described in Family Medicine, may improve physicians' comfort level with these conversations. Having Medicare and private insurers pay for advance care planning discussions is a helpful first step, but as Drs. Joanna Paladino and Erik Fromme observed, "clinicians cannot improve the care of people with serious illness alone—to be successful, they need health system changes that support better conversations over the continuum of care."