A HEALTH PROMOTION AND COMMUNITY ENGAGEMENT CONTEXT FOR ADVANCE CARE PLANNING
Public health approaches to death, dying, loss, and EOL care—employing “new” public health ideas such as health promotion and community development—have been increasingly popular internationally (see Cohen
& Deliens, 2012; Conway, 2011; Monroe & Oliviere, 2007; Sallnow, Kumar, & Kellehear, 2012). These approaches also have their advocates in the United States (see Rao, Anderson, & Smith, 2002; Rao et al., 2005). The social philosophy behind public health strategies is principally to “normalize” care in the contexts of death, dying, loss, and care for carers, and to build community capacity for resilience inside these experiences. By encouraging the major social institutions—schools, workplaces, churches/temples, or local media—to take some small responsibility for care in these areas, ordinary community members gain a greater capacity for understanding, caring, and resilience about death, dying, and loss while at the same time minimizing their own shock, trauma, or avoidance responses. These contexts promote responsiveness, active compassion, openness, and resilience toward difficult but regularly occurring death-related events and experiences.
In Australia (Kellehear & O'Connor, 2008) many “health-promoting” palliative care services have created partnerships with schools and workplaces to develop schoolor workplace-based policies on death, dying, and loss. Such policies help create structured or formal responses to unexpected serious illness, death, or bereavement, and encourage whole systems such as schools or workplaces to react formally with support. Like policies for health and safety, policies for death, dying, loss, and care encourage everyone to publicly acknowledge the health and well-being of all workers or all students, teachers, and parents, and under the rubric of the policy, create a safe environment for support, resilience, and openness. It's okay to speak openly about serious illness, death, loss, and the difficulties of caring in these matters. Workplace and school policies publicly endorse and encourage care.
In Japanese villages, shops in the main business district help share the burden of respite care for families living with dementia (100-Member Committee, 2012). Businesses have volunteered to provide and share shortterm “minding” of ambulant people living with dementia with other businesses, temples, or public associations to relieve families and share this responsibility with existing health and social care providers. This public recognition and sharing of respite care is also part of other programs on “wandering-senior safety networks”—a network of neighbors and businesses who take it upon themselves to look out for wandering seniors who appear lost.
Other dementia-friendly programs bring young people at school in close relationship with people living with dementia by including people
living with dementia in their sports day organization and management, or by encouraging seniors with dementia to provide street safety patrols for the purposes of watching over children traveling to and from schools. These kinds of programs allow all people to gain greater insight and understanding of dementia and the complexities of care. These community programs break down the common isolation of not only seniors living with dementia but also the families that care for them. Talk about dementia and dementia care becomes ordinary, routine, and open, and stigma and embarrassment are minimized or banished all together.
Towns in India partner with local palliative care services to share and participate in EOL care (Kumar, 2012). Housewives, lawyers, university teachers, taxi drivers, builders, school children, or police volunteer their time to a “neighborhood network” that provides transport services and needed medical supplies to patients and their families. People from all walks of life commit a certain amount of their time to a “time bank” for the neighborhood network—sometimes just a couple of hours per week, up to several days per week, depending on occupation and personal preferences. In these ways, living with dying and living with loss evolves to become a shared and public experience. The isolation of private grief, the burden of complex care, the difficulties of arranging transport to services, or even the high costs of needed drugs, is shared by these communities of “neighbors.” Death, dying, loss, and care become everyone's responsibility.
In the Republic of Ireland and the United Kingdom, local palliative care services have developed “compassionate communities” to raise awareness and encourage participation in matters to do with death, dying, loss, and care (Conway, 2012; Kellehear, 2005). Just as “healthy cities/communities” encourage multisector community support for health and well-being by endorsing or engaging in healthy activities for a community, so too “compassionate community” programs encourage people to participate in support experiments and projects around death, dying, loss, and care—from public ceremonies around memorialization, to “trivial pursuit” game nights at pubs where most of the questions and answers relate to “death & dying,” to book clubs that encourage reading of first-person accounts of serious illness or loss. Other examples include libraries that place helpful suggestions on the back of their regularly printed, free bookmarks on how to support friends and families living with loss; art or short-story writing competitions about living with a life-threatening or life-limiting illness, living with loss, or living as long-term carer; and arranging and promoting annual “open days” at local funeral businesses or hospices.
All these above examples employ mainstream health promotion, health education, and community development theory and interventions for the promotion of health and well-being for those living with life-threatening or life-limiting illness and bereavement, as well as all those who care for them. Care for everyone touched by serious illness or loss becomes
shared. Awareness of the fragility of life becomes a regular and “normal” remembered experience. Discussions about will-making or advanced care directives in this wider context become a non-threatening topic of conversation that is both meaningful and relevant for the volunteer work, school experience, or workplace policy in which they are currently involved and engaged. Topics such as advance care planning become topics of concern that are included seamlessly into other—and now related—community activities that have a similar role and purpose.
These broad experiences—coming as they do from key social institutions in their community—act as “early interventions” in the service of prevention and harm reduction strategies that alter and reshape the social and cultural environment to promote a greater awareness and participation context. This altered context in turn promotes a more open, relaxed, less threatening, and more receptive context for discussion and activities for topics such as advance care planning.