Outcomes That Define Successful Advance Care Planning: A Delphi Panel Consensus

Abstract

Context Standardized outcomes that define successful advance care planning (ACP) are lacking. Objective To create an Organizing Framework of ACP outcome constructs and rate the importance of these outcomes. Methods This study convened a Delphi panel consisting of 52 multidisciplinary, international ACP experts including clinicians, researchers, and policy leaders from four countries. We conducted literature reviews and solicited attendee input from 5 international ACP conferences to identify initial ACP outcome constructs. In 5 Delphi rounds, we asked panelists to rate patient-centered outcomes on a 7-point “not-at-all” to “extremely important” scale. We calculated means and analyzed panelists’ input to finalize an Organizing Framework and outcome rankings. Results Organizing Framework outcome domains included process (e.g., attitudes), actions (e.g., discussions), quality of care (e.g., satisfaction), and healthcare (e.g., utilization). The top 5 outcomes included (1) care consistent with goals, mean 6.71 (±SD 0.04); (2) surrogate designation, 6.55 (0.45); (3) surrogate documentation, 6.50 (0.11); (4) discussions with surrogates, 6.40 (0.19); and (5) documents and recorded wishes are accessible when needed 6.27 (0.11). Advance directive documentation was ranked 10th, 6.01 (0.21). Panelists raised caution about whether “care consistent with goals” 6.01 (0.21). Panelists raised can be reliably measured. Conclusion A large, multidisciplinary Delphi panel developed an Organizing Framework and rated the importance of ACP outcome constructs. Top rated outcomes should be used to evaluate the success of ACP initiatives. More research is needed to create reliable and valid measurement tools for the highest rated outcomes, particularly “care consistent with goals.”

Engaging Diverse English- and Spanish-Speaking Older Adults in Advance Care Planning

“…31 The high proportion of patient-reported ACP engagement for both documentation (85%) and discussions (94%) in the PREPARE arm further validates our medical record findings and demonstrates that patients engage in a range of ACP behaviors, such as discussions with surrogates and clinicians, in addition to documentation. 19,23,32 …”

Explicit prognostic disclosure to Asian women with breast cancer: A randomized, scripted video‐vignette study (J‐SUPPORT1601)

“…Thus, the result of the binary analysis shown in Table 2 is the most important and valid. 52 Future studies are needed to elucidate the longitudinal effects of prognostic disclosure combined with multifaceted ACP interventions involving not only patients but also their loved ones with an Asian origin. Of note, although explicit prognostic disclosure tended to improve self-efficacy, the difference did not reach significance, unlike in a previous study.…”

Living Wills: One Part of the Advance Care Planning Puzzle

“…However, goal‐concordant care and communication are outcomes that are difficult to measure. Identifying metrics that evaluate goal‐concordant care is vital to examining the effectiveness and quality ACP interventions, yet no standardized metric is currently available . Although validated patient‐reported surveys of ACP are available, it is difficult to abstract this information from the medical record, especially given the notoriously poor documentation by clinicians of these important ACP conversations …”

“…LWs likely became the metric of successful ACP because, unlike ongoing communication, they are relatively easier to measure. 4 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. 5 Yet many called into question the efficacy of solely focusing on LW documentation 6,7 and even proposed an outright elimination of the practice.…”

“…Identifying metrics that evaluate goal-concordant care is vital to examining the effectiveness and quality ACP interventions, yet no standardized metric is currently available. 4 Although validated patient-reported surveys of ACP are available, it is difficult to abstract this information from the medical record, especially given the notoriously poor documentation by clinicians of these important ACP conversations. 12 Although LWs alone may be insufficient to move the needle on the healthcare utilization outcomes described in the article, this study does not confirm that the broader consensus definition of ACP is ineffective.…”