An emerging home death movement believes the astonishing discrepancy between how and where we would prefer to die and the institutional settings where our deaths occur is a social justice issue, reports Dr Janene Carey.
At a conference in western Sydney earlier this month, a young woman died of a terminal illness.
Her mother’s grief was dreadful. She wept, holding her dead daughter’s hand, she stroked her hair, she climbed onto the bed to lie down beside her. Conference attendees surreptitiously wiped tears from their eyes. They listened as phone calls were made, they watched as practical things were done. A woman from a support organisation called Life Rites arrived with a cooling bed and reminded the family they could legally keep the body for up to five days. There was no need to rush through this transition period, she said. Take all the time you need to say goodbye.
The actors were portraying the final tableau of a death at home, at a conference dedicated to a concept called Death Literacy. Close to 100 people came. Doctors and nurses working in palliative care, funeral celebrants with unorthodox views, academics researching how society handles the end of life, authors of books about death and dying, and people who call themselves by strange and challenging names, such as death walker, death midwife and death doula.
In surveys, 70 to 80 percent of people in Western countries nominate home as their preferred place of death. About 140,000 Australians die each year, and three-quarters of those deaths are ‘expected’ due to age or illness. But predominantly we die in hospitals. Too often, even expected deaths are treated as medical emergencies and happen under harsh lights in a noisy intensive care unit. Only 16 per cent of us do actually die at home.
Why is there this gap between what we say we want and what we get? What can be done to return the dying process to the sanctuary of a familiar place, where the dying person can be tended by those who love them?
Such questions are being tackled by an emerging home death movement spearheaded by people such as Associate Professor Debbie Horsfall from the University of Western Sydney and Kerrie Noonan, PhD candidate and founding director of The GroundSwell Project, an organisation that’s trying to create cultural change around death and dying. Both women believe the astonishing discrepancy between how and where we would prefer to die and the institutional settings where our deaths occur is a social justice issue.
Dr Horsfall and Ms Noonan were joint first speakers at the Death Literacy conference held in Parramatta on 6 September. Their Caring at End of Life research investigated how informal networks can support families as they care for a dying person at home, and how as a society we can regain the practical knowledge and wisdom that was lost when death and dying were outsourced to the medical system and the funeral industry early last century.
Rather than focusing on the stresses and burdens borne by individual family carers and the patchy health services and resources available to support them, the Caring at End of Life research project has been looking at the problem from a community development perspective. The idea is to lift the taboo on talking about death and improve our death literacy as a society, so that a family’s informal connections within the community can be mobilised to rally round and help. Such a community network potentially embraces a wide circle of friends and acquaintances linked to the family through work, social groups, churches, sporting clubs and schools.
“Communities need to understand what it means to care for someone dying at home. It’s a community event where each person has a role to play,” Dr Horsfall said. Potential tasks are many and varied: driving the patient to appointments; doing housework or gardening; shopping or cooking for the family; coordinating childcare; walking the dog; being available for respite care or emotional support; keeping far-flung friends and relations abreast of the latest news via Facebook or emails; planning the wake or the funeral, and last but not least, helping the family adjust to life without their loved one.
Caring for someone in their final days or weeks of life is a 24/7 effort. The importance of fostering informal community networks to support family carers is something health service professionals often overlook.
“The professionals think of themselves as central, but families tend to see them as part of their outer network,” Dr Horsfall said. “They are essential, but not that important. They are around for half an hour, or an hour at most, of the 24.”
The Caring at End of Life research project found that being part of a caring network at the end of someone’s life was a transformative experience. People gain new knowledge, skills and attitudes about death and dying, they become more connected to their community, and generally feel privileged and proud to have been involved. They share what they have learned with others, and their stories create a “ripple effect” that lifts death literacy across the broader society.
In conjunction with other grassroots initiatives such as the Dying to Know Day events organised by The Groundswell Project, this makes it more likely that when someone says they want to die at home, they will understand what it entails – and they might actually achieve it.
Dr Janene Carey is a freelance writer, editor and academic. She is the author of A Hospital Bed at Home: Family stories of caregiving from diagnosis to death