The Retreat From Advanced Care Planning

Abstract

THE SPECTER OF DEATH PANELS LIVES. 1 AS A REMINDER of their origin, the House of Representatives version of what eventually became the Affordable Care Act (ie, the health care reform bill passed in 2010) included a provision authorizing Medicare to reimburse physicians for the time they spend discussing with patients their goals and preferences surrounding end-of-life care. “Advanced care planning” is the term used for the process of patients’ thinking about and communicating their values and preferences, whereas the term “advanced directive” refers to the related legal document. The advanced care planning process helps ensure that individuals receive the health care they desire at the end of their lives. The provision had widespread bipartisan support until the summer of 2009, when Sarah Palin morphed talk of providing support for patients who wanted to have a discussion with their physicians concerning their priorities into rhetoric alluding to “death panels.” The provision was removed from the pending legislation in reaction to the ensuing maelstrom. In the fall of 2010, voluntary advanced care planning was included in the draft regulation covering the new annual wellness visit that provides Medicare coverage for preventive services that have a compelling evidence base. Evidence shows that patients who talk with their physicians about their preferences for end-of-life care felt they had more ability to influence their medical care, believed their physicians had a better understanding of their wishes, and indicated a greater understanding and comfort level than they had before the discussion. Families also reported less stress after the patients died. The public comments on the draft of the annual wellness visit including advanced care planning were positive. But media commentators again discovered the issue, and the controversy was rekindled. Despite the positive public comments and the compelling evidence base that advanced care planning improves patient-centered care, provision for advanced care planning was removed from the annual wellness visit, presumably at the behest of members of the administration. Over the past year, the Centers for Medicare & Medicaid Services (CMS) has published several additional rules and regulations including new payment rules and the Hospital Conditions of Participation, the conditions that hospitals must meet to participate in the Medicare and Medicaid programs. None of these rules or regulations included mention of voluntary advanced care planning. Given the support of CMS for patient-centered care and value-based purchasing, it was reasonable to expect that advanced care planning–related measures would be included in at least some of the new CMS rules, regulations, and programs. Their absence is notable. Almost 2 and a half million people in the United States die every year, making death the most common health event in the United States. Clinical decision-making predicated on meeting an individual’s health priorities is the cornerstone of patient-centered care. When faced with advanced illness and the end of life, patients vary in what care and outcomes they prioritize. Some want aggressive treatment focused on prolonging life as long as possible; others want care focused on comfort, function, and quality of life. Patientcentered care dictates that physicians offer care consistent with the individual priorities and preferences of patients. Physicians cannot provide care consistent with patient wishes, goals, and priorities, however, if they do not know them. Even without CMS provisions covering advance care planning, physicians are not prohibited from engaging in advanced care planning discussions with their patients. Media misrepresentation and the absence of endorsement of advance care planning by the administration and CMS, nevertheless, affects the relationship between physicians and patients. The administration’s acquiescence, as much as the “death panel” falsehood, compromises the openness and trust between patient and physician that is needed to elicit patients’ priorities and preferences. By not forcefully reacting to the misleading statements, the administration has unwittingly created an aura of doubt. By its unwillingness to make the case for the centrality of advanced care planning to health care, the administration lends credence to the no-