End of Life at Home: Co-Creating an Ecology of Care
The majority of people (70–80%) when asked where they would prefer to die say they want to die in the comfort and intimacy of their own homes (Gomes et al., 2013; Palliative Care Australia, 2011). However, only 16–20% of people manage to fulfil this wish. This report documents Stages 2–4 of the Caring at End of Life Study, which identified the end-of-life care arrangements that allowed 20% of terminally ill people to be cared for at home. We wanted to know how ordinary people supported each other to care for someone dying at home, how their wider community supported the carer, what formal support was available to carers and how those formal and informal networks interacted with each other. Over 200 primary carers, and members of formal and informal caring networks contributed to the study. They participated in individual carer interviews and focus groups in eight urban and regional locations. We used participatory visual methods, such as photo/voice and network mapping, to capture collaborative caring stories and illuminate the space of the possible found within communities undertaking end of life care. Findings from Stage 1 show that formal providers are supportive of the informal networks’ role in the care of the dying at home.1 However, formal service providers do little to establish, support, or maintain the informal networks although there is much goodwill and scope for them to do so. We identified several barriers to formal and informal networks working together more effectively. In particular, we found that the Australian policy of health promoting palliative care (HPPC) is not substantially translating to practice, and there is potential for a stronger and more proactive reorientation towards HPPC and a community capacity building approach. Overall findings: We found that the dying person and their caring networks exist within a complex web of social-environmental relationships where the knowledge, skills, values, attitudes and beliefs of network members are influenced by the following factors: existing relationships with people and place; formal and informal organisations and groups to which they already belong; the nature of the communities in which they live; social norms and expectations of the groups and cultures with which they identify; experiences and knowledge of health services and other social support organisations (see also Huang, 2014). While this web of pre-existing relationships affects a network’s ability to come together in the first place we also found that this was a two way street. Members of networks who cared were affected by their caring individually, collectively and communally. No-one, and no environment, remained the same, so this web of relationships and the knowledge, skills, values, attitudes and beliefs within the web also changed. This ecological view of caring asks that we put our understanding of these interrelationships first and foremost (Richard et al, 2011). The concept of an ‘ecology of care’ (as both a goal and a possibility) puts place and environment – and people’s attachment to place – centre stage in end-of-life care, incorporating as it does, concepts of trust, shared norms, collective action and social agency as integral to the building of strong community-based care networks. The ecological viewpoint – that all living things have a relationship to each other and to what’s around them, and that human beings (and human systems) have the capacity to act selectively with the environment to achieve a harmonious relationship (Bronfenbrenner, 1989), has very practical application in the context of an end-of-life care environment.