LAUSR

Historically, the measure of advance care planning (ACP) success was the documentation of living wills (LWs) or advance directive forms. These documents outline individual preferences, often in check-box fashion, for life-sustaining treatments such as cardiopulmonary resuscitation and mechanical ventilation. In addition, advance directive forms allow individuals to designate a surrogate decision maker in case of decisional incapacity. However, the definition of ACP over recent years has broadened. This broadened ACP paradigm, defined by international expert consensus, is a process, rather than a singular moment or document, that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care. This approach also focuses on preparing both patients and surrogates for decision making by supporting communication skills and helping individuals define their own values in addition to completing LWs or advance directives. LWs likely became the metric of successful ACP because, unlike ongoing communication, they are relatively easier to measure. In the United States, the 1990 Patient Self-Determination Act mandated that institutions provide written information on policies related to LWs, and as such, they have been adopted as a key quality metric in many models of care. Yet many called into question the efficacy of solely focusing on LW documentation and even proposed an outright elimination of the practice. Such sentiments beg the question: Does documentation of an LW effectively signify that quality ACP has taken place? In this issue, Higel et al investigated if the presence of an LW in the medical record impacts end-of-life (EOL) outcomes. The authors of this systematic review cite 28 studies and ask two important questions: (1) Does the presence of an LW impact EOL care, mitigating outcomes suggestive of more aggressive care? and (2) Does the state of ACP science reflect studies that are rigorously conducted in a way that minimizes bias? A number of elements made this review compelling. First, it only included studies with well-defined parameters for LW documentation. LWs needed to reflect the patient’s wishes for the management of their EOL, not just surrogate designation, and required the document be drawn up by the patient, not a surrogate. Second, the authors approached these questions from a global perspective and included studies from multiple countries in a number of different languages. Lastly, they used the Risk of Bias in Non-Randomized Studies of Interventions (ROBINSI) tool to critically evaluate the presence and extent to which multiple forms of bias may color the findings. The authors concluded that they cannot universally demonstrate a significant impact of LWs on outcomes related to EOL care (place of death, hospitalization, intensive care unit [ICU] care, life-sustaining treatments, and receipt of less aggressive medical treatment). Furthermore, 93% of the studies that were reviewed demonstrated a serious risk of bias. These findings point to inherent challenges within the field of ACP research. One interpretation of these findings may be that LWs are, at best, ineffective and, at worst, a waste of precious resources. Fagerlin and Schneider methodically identified fatal flaws of using LWs including, among other issues, that most patients fail to complete them and that LWs are often not available when needed; LWs contain vague language that is not applicable to future health states; LWs are signed by individuals who may not be truly informed, and surrogates often do not know they were chosen and are often unprepared. In addition, other work demonstrated that many legal requirements have created overly complex forms that are difficult to read and execute. However, it would be an error in the interpretation of these findings to equate the inadequacies of LWs to the broadened process of ACP. As described earlier, LWs are often limited to a check-box approach of life-sustaining treatments that fail to address the goals and values behind those choices. The forms are also, on average, 5 years old and may not represent current medical wishes. As already stated, ACP should be a process of identifying one’s values and goals and communicating these over time. As the authors point out, LWs have the potential to improve psychological and emotional outcomes for patients and families. These types of outcomes may be just as important to quality of life for patients as well as downstream outcomes for surrogates, who have to live with their decisions and have subsequent interaction with the healthcare system. The broadened paradigm of ACP emphasizes the importance of not only naming a surrogate decision maker but also preparing them to advocate for the individual. In the current article, studies with surrogate involvement were excluded, and therefore it was not possible to investigate the role of surrogates in EOL outcomes. In addition, communicationbased ACP, not just form-based ACP, was shown to have a range of benefits including an increased likelihood that DOI: 10.1111/jgs.15688