Barriers to Advance Care Planning: A Sociological Perspective

John Ryan Jill Harrison

People plan for things. Certainly not everyone and maybe not all the time, but people plan for the future in various ways. They plan for weddings, they plan for college, they buy health insurance, they open savings accounts, they buy car insurance, they start retirement mutual funds, and a few buy long-term care insurance. It's an uncertain world and one way of reducing uncertainty is planning. People plan for death. There is no uncertainty that death will come, but when, where, and in what form is uncertain. So people buy life insurance and they buy burial plots. What people don't do, at least most of them don't, is plan for the type of medical care they will receive at the end of their lives (Black, 2010; Fagerlin & Schneider, 2004). Despite efforts to promote and educate, advance care planning (ACP) is in place for only a relatively small fraction of adults in the United States (see, e.g., Barnes et al., 2011; Gallo et al., 2002). Despite well-intentioned and expertly developed education programs, and a conducive legislative environment, efforts to empower patients to engage in ACP do not appear to be working (Jezewski, Meeker, Sessanna, & Finnell, 2007). So the question is, what is it about ACP that seems to make it a particularly problematic form of planning for the future?

In this chapter, we argue that ACP poses a particular set of dilemmas for the public that are either absent or less salient in planning for other life events. We argue further that these dilemmas, while being enacted at the microlevel of social interaction (e.g., between patients and doctors, among family members and friends), are embedded in broad cultural themes that leave many people feeling ill equipped to do what we are being asked to do—decide on future medical interventions. Our purpose here is to examine some of those cultural themes and the ways in which they may impact decision making using a sociological perspective. This chapter is organized in the following way: First, we place ACP in the context of cultural themes that we believe problematize its use for both physicians and the public. Second, we use Parsons's (1959) conceptualization of the sick role to frame the dynamics of end-of-life (EOL) care.

THE KNOWLEDGE SOCIETY AND THE CULTURE OF DECISION MAKING

Rational Knowledge

We know that most people do not engage in ACP. Numerous explanations have been offered for this phenomenon, across a wide range of studies (see, e.g., Field & Cassel, 1997; Fischer, Arnold, & Tulsky, 2000), including: confusion, procrastination, avoidance, anxiety related to death, denial of needing to complete ACP, lack of time, no one to name as a health care proxy, suspicion, and lack of trust. While these studies are important in explaining the lack of ACPs, in this section we explain this reluctance in the context of a broader cultural force that, we will argue, makes the decision to engage in ACP extremely problematic. This cultural force is the rationalization of knowledge (Weber, 1978). By the rationalization of knowledge we mean an increased emphasis on technical expertise, empirical knowledge, cost– benefit analysis, and efficiency over traditional forms of knowledge and moral judgment. The aim of rationalization is both efficiency and a reduction in uncertainty. Both are thought to be aided by developing knowledge through careful, objective, and methodical observation with the scientific method as the prototypical model. This knowledge is codified, certified, and placed in the hands of credentialed experts who are able to apply it in appropriately designated areas of social life.

The roots of rationalization can be traced through the Renaissance, the Protestant Reformation, and the Enlightenment, leading to the flowering of science in the 19th century (Gellner, 1988; Illich, 1975). The rationalization of knowledge is both a cause and consequence of the increasing size and complexity of societies. In a mutually reinforcing cycle, size and complexity go hand-in-hand with more knowledge production and an increased division of labor. In the process, jobs become more specialized and knowledge becomes detached from the everyday experience of the average person. While less complex societies are held together by the shared experience of their members, large complex societies are held together by this specialization and the interdependencies it produces (Durkheim, 1947). In the process,
the pursuit and economic exploitation of knowledge became a defining feature of modernism and what is often referred to as the “knowledge society” (Böhme & Stehr, 1986; Gellner, 1988; Kirkpatrick, 2008).

 
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