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DISCUSSION

All human decisions are inherently bound up in social relationships and cultural contexts in which beliefs and structures constrain action. Now that we have placed ACP in a sociocultural context, we argue that the context for ACP is to not plan. Why? As we have argued, we exist in a cultural context wherein we have given over our power to experts and technology, and as a result, we experience a loss of capacity to make independent decisions. At the same time, the sociocultural context of the sick role and its various rules and obligations is reinforced across all stages of the life course. The process of proactive ACP in the context of advancing old age works against the idea that the medical system has the ability to cure you, faith in technology, faith in expertise, and medicine; not to mention the cultural contexts of denying and avoiding old age. The process of ACP in the context of terminal illness, regardless of age, means that individuals must choose to not perform their roles adequately as sick people because they are supposed to try and get well and believe that experts and their technology will save them. We argue that these social contexts constrain ACP decisions much more than they support it. These sociocultural contexts and social norms are so embedded and important to human interactions that interventions at the individual level to increase ACP have not been successful. Focusing on the broad cultural themes that shape engagement and decision making could result in more nuanced understandings of ACP and the complexities of the social relationships and roles that constrain it. Although ACP is focused on death and dying, the process must be acted out against the sociocultural backdrop of life and living.

We believe that this perspective provides an important context for studies of ACP. For example, some research has found that a barrier to ACP is confusion about the treatment options (Sudore, Schillinger, Knight, & Fried, 2010). Our argument is that confusion is built into a system that emphasizes reliance on technical expertise while at the same time giving the illusion of patient choice. Other research (Barnes et al., 2011) has found that cancer patients had not spoken with health care professionals and close persons about ACP. A primary reason was fear of distressing family members. We argue that the concept of the sick role and its expectations help explain this phenomena.

In summary, our argument is that ACP is embedded in a larger cultural context that greatly hinders its implementation. Studies of the microlevel forces that influence the decision to engage in ACP are best understood by
acknowledging these broad forces of the reliance on expert knowledge and sick-role expectations in a knowledge society.

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