Garnering Support for Advance Care Planning

Abstract

THE RECENT TRANSFIGURATION IN THE POPULAR press of a proposal to provide Medicare reimbursement to physicians for advance care planning (ACP) into the creation of “death panels,” which would decide the fates of older and disabled individuals, can be seen as more than a political maneuver to discredit health care reform efforts. It provides valuable insights into how the notion of ACP is perceived by the general public and a lesson for the medical community about how to promote ACP. As originally presented in America’s Affordable Health Choices Act HR 3200, section 1233 entitled Advance Care Planning Consultation described reimbursement for a clinician visit in which a practitioner explained advance care planning, living wills, the role of a health care proxy, and orders regarding life-sustaining treatments. This section of the bill was distorted by many politicians and commentators into a mandate by which older and disabled individuals would be forced to forgo life-sustaining treatments. Advance care planning, widely viewed by the medical community as an underused means of improving end-of-life care by allowing patients to exert their fundamental right to self-determination over future events and to ensure that they receive care at the end of life consistent with their values, was thereby transformed into a means for the government to deny individuals the care they desire. How could this have happened? The answer lies both in the history of and prevailing attitudes toward ACP. Although ACP had been a part of medical care and local legislation for a decade, it became a nationally sanctioned method by which individuals could forgo medical care with the Patient Self-Determination Act of 1990 and the Supreme Court decision Cruzan v Director, Missouri Department of Health in the same year. In the latter, the court affirmed the right for individuals to refuse unwanted therapies if they became incapable of making decisions. The Patient Self-Determination Act required that all agencies receiving Medicare or Medicaid funds ask all patients about the existence of advance planning documents and offer to help them complete such documents if desired. Thus, the focus of ACP became the documentation of directives regarding the care that individuals would not receive at the end of life. Based on the recognition that seriously ill patients are at risk for receiving highly burdensome care with limited benefit, the medical community caring for seriously ill patients generally assumes there is a pent-up demand among individuals to participate in ACP and to put a limit on the technologically invasive care they will receive at the end of life. Undoubtedly, many individuals may want the opportunity to state their desire to forgo medical interventions in advanced illness. However, the recent media experience with America’s Affordable Health Choices Act provided the opportunity for expressions of support for ACP. The fact that this support did not occur reflects what may be in part due to a pervasive concern in the general public—not that they will receive too much care but rather, that they will receive too little. Although there has been little direct empirical study of the phenomenon, indirect evidence supports this assertion. Even patients with advanced illness often desire technologically aggressive and potentially burdensome care for illness exacerbations. One commentator attributed this willingness to undergo continued interventions to the “widespread and deeply held desire not to be dead.” Although individuals may want to limit their care under conditions when death is inevitable, medicine can rarely provide this level of prognostic certainty, and accustomed to hearing about the miracles of modern medicine, patients may worry that the physician will give up too soon. Moreover, increasing evidence suggests that substantial proportions of patients may not want to plan for their endof-life care, based on the beliefs in the need to take things one day at a time, the impossibility of being able to plan for the future, or the difficulty in contemplating serious illness and death. Underlying these attitudes is the societal phenomenon in modern western cultures of the denial of death, which is fueled by the ever-increasing ability of modern medicine to postpone the inevitable. Advance care planning may best be considered a part of medical care similar to counseling about exercise, smoking