Bringing the Community Back In
Too often we do not name the activity that is most important to living and dying. It is not medicines and holy oils that make us want to live, or die, in peace, but the social relationships and meanings of a personal lifetime. It is important to realize that the history of travellers in the valley of the shadow of death is also a history of our community care and support for each other.
Allan Kellehear, 2005, p. 2
Critical to the new path currently being charted in ACP is a shift from a provider-focused model to a community focus (Hammes, 2003), returning matters of life and death to the wider milieu of family and community, which from the beginning of human history has played the central role in death, dying, and loss (Kellehear, 2007). This shift also signals a move from a rights-driven process focusing on individual autonomy and control to a shared process that acknowledges that we live and die not alone, but fundamentally in relationship with others (see Briggs, 2003; Hammes, 2003; Holstein, et al., 2011; Kellehear, 2005, 2007).
Ethicists Holstein et al. (2011) assert that any change in how we deal with dying and death must start with “a consideration of what is special about dying people and those who love and care for them” (p. 246). Accepting our vulnerability and embracing relationship and mutual interdependence, not individual choice and self-control, they suggest, should be at the foundation of an approach to ACP that takes into account the wide variation in how people want to participate in decisions related to EOL care. Emphasizing the importance of the discussions that should precede the signing of documents, Holstein and her colleagues recommend the use of “interpreters” (p. 250) or advocates who help facilitate discussions among individuals, families, and health care professionals. Finally, they conclude:
With our understanding of people as essentially relational, developing their identity and values from the contextual features of their lives, we take as essential the continuity of relationships and care as central to whatever chances for well-being remain for people nearing death (p. 251).
According to Seymour and Horne (2011), changing the way we plan for EOL care requires nothing short of a “sea change in attitudes to discussing and anticipating end-of-life care among the public” (p. 23). They argue that “the traditional autonomy-focused framework of ACP and emphasis on the completion of instructional directives is out of step with the perspectives and needs of patients” (p. 21). They point out that existing research on ACP indicates a need for broader initiatives that focus on discussions that identify persons' values and goals and, especially important, public education in schools and the wider community to raise awareness of issues related to EOL care prior to a life-threatening illness. They conclude: “Finally, in order for Advance Care Planning to be successful, it needs to be embedded in systems of care designed to provide support to those facing the end of life, in recognition that serious illness and dying are worthy of the same care and attention that we give to birth, acute illness, and injury” (p. 24).
The RAND Corporation's comprehensive report on ACP recommended a multi-component approach including not just education focusing on patients and providers and health behaviors but intensive
and targeted community campaigns including innovations such as the use of social marketing; support of ACP models that focus on a developmental discussion process, not form completion; the development of health information systems to share care decisions across systems; and continued research on the effectiveness of these concerted efforts (Wenger et al., 2008). Likewise, nurse educators Nevidjon and Mayer (2012) called for members of the nursing profession to capitalize on the “unique trust relationship” (p. 151) nurses hold with the public and help stimulate community conversations (similar to those sparked 40 years ago by Kübler-Ross and Dame Cecily Saunders) in churches, service organizations, and other venues.
Community is also the central focus of sociologist Allan Kellehear's comprehensive recommendations for a public health approach to death education. Any effort toward ACP cannot be effective without what he calls a “whole community” model, moving from control by medical professionals and health care institutions to the development of community support systems in a wide variety of venues, including the workplace, churches, and other institutions (Kellehear, 2005, p. 24). Kellehear points out that the community has over time ceded control of dying and death to medical, legal, and religious professionals (Kellehear, 2007). He advocates for the democratization of EOL care, pointing out that community and family members don't need permission or reimbursement to talk to one another about EOL (Kellehear, 2005).
Kellehear calls for a participatory, community development approach to death education that includes the employment of community development workers by health care and government institutions and (even more important) the deployment of unpaid community activists—such as those who championed civil rights and other justice movements—who apply their organizing skills to build what he calls “compassionate cities” (Kellehear, 2005) that provide support to those experiencing dying, death, and loss— which is all of us.