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: The objective of this study was 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 five international ACP conferences to identify initial ACP outcome constructs. In five Delphi rounds, we asked panelists to rate patient-centered outcomes on a seven-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 health care (e.g., utilization). The top five 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" 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."

Keywords: Advance care planning; Delphi technique; consensus; outcome measures.

Conflict of interest statement

Conflict of Interest Disclosures: Dr. Green is a co-creator of the advance care planning decision aid, Making Your Wishes Known, which was developed for research purposes and is available free of charge. He has financial interest in Vital Decisions, which is developing a commercial version of the program. Dr. Simon is a Physician Consultant in Advance Care Planning and Goals of Care, Alberta Health Services, Calgary Zone. No other disclosures were reported.

Published by Elsevier Inc.

Figures

Figure 1. Delphi Method Flowchart

aIndividual constructs are listed in the Appendix. b5 International lectures given by author R.L.S. (i.e., Canadian Researchers at the End of Life Network—Hamilton, Ontario, Canada, October 2013; University of Washington Palliative Care Conference, Seattle, Washington, USA, April 2014; Canadian Researchers at the End of Life Network, Calgary, Alberta, Canada, May 2014; European White Paper on Advance Care Planning, Erasmus University Rotterdam, Wassenaar, Netherlands, June 2014; and the University of Colorado Palliative Care Conference, Denver, Colorado, USA, October 2014). cUnit of Analysis refers to whom the question is being asked – at the patient, surrogate, or clinician level or through healthcare system data. For example, ACP discussions can be measured at the patient level by self-report, as well as by reports from surrogates and clinicians and by administrative data at the healthcare system level. dConstructs were deleted if the mean rating was ≤ 1 SD below the overall mean. Constructs were consolidated based on content analysis by the steering committee.

Figure 2. Organizing Framework of Advance Care Planning (ACP) Outcomes

Because validated measures (i.e., survey instruments or questions) have yet to be standardized for most ACP outcomes, we focused on identifying overarching ACP outcome domains into an Organizing Framework and rating outcome constructs within those domains, rather than rating individual questionnaires, quality metrics, or survey questions. a) Moderator Variables (largely un-modifiable) may influence the effectiveness or change the strength of an effect or relationship between two variables, such as an intervention’s ability to affect an outcome (i.e., moderators may act as an effect modifier). Moderators can often be used in stratified analyses. b) Unit of Analysis refers to ranking of the outcome construct at the patient, surrogate, clinician, or healthcare system level. ACP outcomes can often be measured at the level of several units of analysis. For example, ACP discussions can be measured at the patient level by self-report, as well as by reports from surrogates and clinicians and by administrative data at the healthcare system level. Units of analysis are interrelated and interact in ways that affect ACP. c) Process/Mediator Outcomes specify how or why an effect or relationship occurs. Mediators describe the psychological process that occurs to create the relationship, and as such are always dynamic properties of individuals (e.g., attitudes, perceived barriers, and behavior change (self-efficacy and readiness). d) ACP Specific Action Outcomes measure an individual’s completion of specific components of ACP (yes or no) such as discussion or documentation of a surrogate or medical preferences. e) Quality of Care Outcomes measure the impact of ACP on quality of care such as perceived satisfaction with care, communication, and decision making. f) Healthcare Outcomes measure the impact of ACP on health outcomes, such as health status, mental health, and healthcare utilization. g) Patient: We use the term patient to distinguish between the surrogate and clinician. However, this refers to any person who engages in ACP. h) Timeframe: All outcomes can be measured at any stage of the life course and over time.