I’ve been reading an interesting research report published last month in Australia. Its title: Bringing our Dying Home: Creating community at the end of life.
It examines how networks of unpaid carers can supplement the services of professional carers and enable dying people to die at home. It shows that the lot of unpaid carers need not be one of drudgery, anxiety and isolation, but an experience which enhances bonds in families, among friends and within the wider community. It asks this important question: What if the Home Death Movement (of which there is undoubtedly a global one), named itself as such and claimed a place at the decision-making table?
The report begins by stating how things are now: Most people die in institutionalised care – usually a hospital – resulting in the modern death becoming “cellular, private, curtained, individualised and obscured” This type of death can mean that people “die badly in places not of our choosing, with services that are often impersonal, in systems that are unyielding, struggling to find meaning in death because we are cut off from the relationships which count most to us.” That most people do not experience dying and/or death in places of their choosing is an astonishing fact; a fact that, collectively, we are either ignorant of or just silent about. It is a fact that speaks to our failings as a society at a time of life that occurs for each and every one of us. [P7, refs omitted]
The report concludes: In the research reported here we found that people can and do care for their dying at home with the help of informal networks of community members. And they do it well. This is not to say that it is easy: it’s not. However, people overwhelming felt privileged and honoured to be involved in a caring network at EOL. Participants successfully mobilised and negotiated complex webs of relationships and engaged in acts of resistance to the Western, expert-based approach to EOL care. The knowledge and skills they developed as a result of the experiential, embodied learning about caring at EOL contributed to the development of social capital and community capacity for the people in this study. People’s relationships, on the whole, increased and intensified and these changes were maintained over time. [P8. EOL = end of life]
Importantly, the report adds that the professionals have a duty to support unpaid carers: In order to make sure that these networks are sustainable and that people who provide unpaid caring are not exploited and isolated, informal carers, and networks, need supporting. Carers need permission and practical hands-on help to gather caring networks together and to negotiate the type of help they need … We would also like to see organisations that provide paid care at EOL take on an active role in promoting death literacy and facilitating and supporting informal caring networks from a community development – or health promotion – perspective.
A Home Death Movement. Yes, we need one of those. This excellent report shows us that, far from being an anxiety-raddled ordeal, the experience of caring for our own as they lie dying offers rich rewards both to individuals and to society.
I am indebted to Hermione Elliott, director of LivingWell, DyingWell, who are, later this year, piloting a similar project in East Sussex, for sending me a pdf of the report, which I can’t upload because the filesize is too big. Email me and I’ll send you a copy: firstname.lastname@example.org