THE PROCESS OF ADVANCE CARE PLANNING INVOLVES UNDERSTANDING, REFLECTION, AND DISCUSSION
Most individuals who complete a written AD are well intentioned. They are hopeful that the plans will guide others in making health care decisions consistent with their preferences. Unfortunately, they are unaware of the obstacles that may prevent their good intentions from being realized. They are often left with a false sense of security that the mere completion of a document will accomplish their intent. While the terms “AD” and “ACP” are often used interchangeably, the distinction between them could not be more important. The typical event of completing an AD does not ensure informed decisions will be made, or that they will be followed. In a study of bereaved family members where 70% of loved ones had completed an AD, significant gaps were found in the type of EOL care they received (Teno, Gruneir, Schwartz, Nanda, & Wetle, 2007).
Without adequate and ongoing discussion, typical ADs are incapable of providing the level of individual choice, comfort, and control in the last weeks, months, or years of life that most desire. In the absence of a quality planning process, individuals who complete ADs (and their families) often experience frustration and disappointment when conflicts arise over treatment decisions. In fact, the original title of the La Crosse program, “If I Only Knew,” represented a common theme from families who faced difficult health care decisions for a loved one without adequate knowledge or understanding of their loved one's goals, values, or beliefs (Colvin & Hammes, 1991). This uncertainty leaves its mark on families required to make substitute decisions. Research has demonstrated that ACP interventions have a positive impact on family members, who report less stress, anxiety, and depression than those not receiving assistance (Detering, Hancock, Reade, & Silvester, 2010; Wright et al., 2008).
The Respecting Choices solution to “If I Only Knew” situations was to help patients verbalize their goals, values, and beliefs well before a medical crisis, and to help loved ones be better prepared. While current authorities recognize the need to move from the mere completion of an AD document to a process of communication, a common definition for this process does not exist. This lack of clarity on the components of an effective ACP process has led to several unfortunate consequences:
■ It is assumed that anyone can initiate ACP discussions, regardless of the quality of their communication skills or preparation.
■ Without agreement on the content of ACP discussions, standardized training programs cannot be developed, and providers do not gain consistent facilitation competencies. ■ Without a competently trained workforce, a consistent and reliable ACP service cannot be delivered or reimbursed.
■ With wide variation in the delivery of ACP services, the ultimate goal of honoring individuals' informed decisions cannot be achieved.
■ Research studies define ACP differently (or not at all), making the ACP intervention difficult to replicate and refine.
Respecting Choices defined the components of the ACP process from the outset of the program as follows: ACP is a person-centered, ongoing process of communication that facilitates individuals' understanding, reflection, and discussion of their goals, values, and preferences for future health care decisions. This definition has guided the training of ACP facilitators and the organization of the ACP team, has produced a competent and reliable ACP service, and has stimulated ongoing quality improvement activities. Below I discuss each of the components and outline how each plays an integral role in the ACP process.