Respecting Choices: An Evidence-Based Advance Care Planning Program With Proven Success and Replication
Linda A. Briggs
With the passage of the Patient Self-Determination Act (PSDA) in 1991, leaders from health care organizations across the United States scurried to set policies and practices in motion to demonstrate compliance with the letter of the law. The admission assessment question, “Do you have an advance directive?” was launched at nearly every health care organization across the country. Forms and brochures were created to inform patients about their rights to have an advance directive (AD). Now, nearly two decades later, this typical approach to the completion of ADs has proven ineffective: the prevalence of completed documents remains low, but even when completed, they are often unavailable, unknown to the treating physician, or too ambiguous to guide clinical decision making (Fagerlin & Schneider, 2004; Tonelli, 1996; Wu, Lorenz, & Chodosh, 2008). Furthermore, ADs may be ineffective in preventing unwanted life-sustaining treatment at the end of life (EOL) (Kass-Bartelmes, Hughes, Rutherford, & Boches, 2003; Lorenz et al., 2004; Teno et al., 2004).
Health care leaders in the community of La Crosse, Wisconsin, took a decidedly different approach to compliance with the PSDA—one more aligned with the spirit of the law and intended to help individuals maintain
Prevalence, Availability, and Consistency of Advance Directives in La Crosse County After the Creation of an ACP System in '91–'93
LADSI* LADSI** P VALUE
Data Collected in '95/'96; N = 540 Data Collected in '07/'08; N = 400
Decedents with ADs
No. (%) 459 (85.0) 360 (90.0) 0.023
ADs found in the medical record where
the person died No. (%) 437 (95.2) 358 (99.4) <0.001
Treatment decisions found consistent with
instructions 98% 99.50% 0.13
ADs, advance directives; LADSI, La Crosse Advance Directive Study One
SOURCE: *Hammes and Rooney (1998). **Hammes, Rooney, and Gundrum (2010). Copyright: 2011 Gundersen Lutheran Medical Foundation, Inc.
autonomy over future health care decisions. The La Crosse approach began with the question, “What assistance do individuals need to plan ahead for future health care decisions?” To best answer this question, the program focused on communication strategies and informed decision making. This approach has clear and convincing evidence that it works. Following implementation of this comprehensive AD model, an evaluation of all adult deaths in La Crosse County over an 11-month period from April 1995 until March 1996 reported that 85% of decedents had an AD; of these ADs, 95% were found in the medical record at the time of death, and 98% of the time there was evidence that patients' wishes were honored (Hammes & Rooney, 1998). Ten years later, these stellar outcomes were maintained and improved (see Table 15.1), thus demonstrating the impact of a well-designed system for sustaining person-centered outcomes (Hammes, Rooney, & Gundrum, 2010). Over the years, this system has become known as advance care planning (ACP) and the proven program as Respecting Choices.
This chapter explores why the Respecting Choices approach is different from typical AD approaches and the reasons why it has worked when other approaches have failed. It describes the key elements for building a successful ACP program and provides examples of how Respecting Choices faculty have assisted in replicating this model in other communities, cultures, and organizations around the world.