THE COMMUNICATION REVOLUTION IN ADVANCE CARE PLANNING: A NEW PATH FORWARD
It is clear that neither simply enshrining in law the right for individuals to make decisions about EOL care through ADs nor concerted interventions to encourage people to complete ADs have been adequate to realize the benefits hoped for 20 years ago when the PSDA was passed. Early efforts to address the apparent shortcomings of the documents focused on trying to find the perfect form (e.g., Abbo, Sobotka, & Meltzer, 2008). In the manner of Goldilocks, the forms were variously said to be either too specific or too vague, and early advocates attempted to find the document that was “just right.” This is perhaps best reflected in the wide variety of documents adopted by the various states as official living will or proxy forms. The plethora of documents in itself has helped create a sense of overwhelm and confusion on the part of the general public, contributing to the low rate of completion of directives.
However flawed or fraught with difficulty in implementation and application ADs might be, most scholars and practitioners have not given up on them. Realizing that ADs are not an end in themselves, the focus has shifted to the broader concept of ACP, with ADs as tools or vehicles to stimulate meaningful discussion about EOLcare (Fagerlin, Ditto, Hawkins, Schneider, & Smucker, 2002; Levi & Green, 2010; Robb-Nicholson, 2010).
From Product to Process: From Advance Directives to Advance Care Planning
Increasingly, the focus of efforts to encourage planning for EOL care has shifted from product (the form) to process (the conversation) (Wenger et al., 2008), from a legal-transactional approach to a communications approach (Sabatino, 2010). Efforts to foster effective communication between individuals and their families, and among individual and families and their physicians, have taken center stage among practitioners working to increase quality of life at EOL and among scholars evaluating these initiatives. An AD is seen as just one piece—albeit, an important one—in a broader agenda to best assure quality of life at EOL.
Mature ACP involves not just the completion of legal documents, but rather a process of communication, a series of conversations, or a “developmental discussion process” (Wenger et al., 2008, p. xvii)—often over the course of years—about one's beliefs, values, fears, and wishes about EOL care. ACP is conceptualized not as a one-time event, but rather as an ongoing process of communication between the individual and his or her loved ones, advocates, health care providers, and others involved in his or her life (Hammes, 2003). Based on a meta-analysis of studies of interventions aimed at increasing the completion of ADs, Bravo, Dubois, and Wagneur (2008) recommended “oral information over multiple sessions” and “repeated encounters with knowledgeable informants” so that individuals could be able to make informed decisions (p. 1131).
According to Detering, Hancock, Reade, and Silvester (2010), this kind of ACP encompasses a coordinated, systematic, patient-centered approach. ADs need to be revised whenever a person's circumstances, medical condition, and goals of care change; an ongoing communications approach allows for such revisions (Kayseer, 2010; Nevidjon & Mayer, 2012). These conversations are “sensitive and time-consuming” (Nevidjon & Mayer, 2012, p. 150), but necessary if individuals and their families are to be equipped with information to explore their options and desires related to EOL care.
Respecting Choices®, of Gundersen Lutheran Medical Foundation in LaCrosse, Wisconsin—one of the most well-known and widely emulated initiatives in ACP—has been a leader in the shift to a focus on ongoing communication about values and goals about EOL care. Instead of being solely guided by the principle of personal autonomy, the focus of Respecting Choices “is on helping persons, in the context of their relationships, to explore and to discuss what it would mean to care about each other if a life-changing medical problem occurred” (Hammes, 2003). The Gundersen model is an iterative one that engages community members in ongoing discussions within their families and with their health care providers at various points in their lives when their social circumstances and medical conditions may change. Rather than asking patients what are their individual preferences about EOL care, they ask,“How can you guide your loved ones to make the best decisions for you?”, placing at center stage a process of ongoing communication among people in relationship with one another. Consultants from Gundersen have traveled throughout the country and abroad helping facilitate community-wide, communication-focused ACP initiatives, and many local, regional, and statewide programs aimed at fostering dialogues about EOL care are underway throughout the United States. (See Part III of this volume for examples of these successful initiatives as well as the chapter on Resources in Part V.)