End of life a community affair

Initial results from ongoing research show families and friends are adept at providing care, but that doesn’t mean they don’t need support. By Darragh O Keeffe.

The majority of Australians may spend their final days in hospitals, hospices or residential facilities, but the bulk of end-of-life care is delivered in the community.

While 70 per cent of people die in institutions, up to 90 per cent of people with a terminal illness spend most of their final year of life at home, with 80 per cent preferring to die at home.

Further, the average length of community-based palliative care is 119 days – 117 days of which is provided by family and friends.

Despite this, the perception persists in the community that dying at home is not an option or that permission must be obtained, said Associate Professor Debbie Horsfall from the School of Social Sciences and Psychology at the University of Western Sydney.

Horsfall is leading a research project looking at the informal and formal supports for people caring for a loved one with a terminal illness at home.

The project’s pilot phase involved focus groups and interviews with 96 participants that focused on their informal supports. It was conducted in conjunction with Home Hospice and Cancer Council NSW.

The results showed the experience of caring was a transformative one for the individual and the community, Horsfall said.

“People learned that you could die at home,” she said. “It was very surprising to us that a lot of people thought you weren’t allowed or someone had to give you permission to do that ... So the popular view is you have to die in a hospital, which is just mind blowing really,” she said.

Horsfall speculated this may be because dying had been institutionalised and to some extent power had been handed over to experts.

“So we think only the experts can do this sort of work. Clearly you need expert intervention and assistance, but anybody can care, anybody can cook, anybody can sit with someone; they’re not specialised tasks,” she said.

There were other key themes that emerged from the discussions with the carers, as set out in the research paper, Bringing our dying home.

Participants clearly stated caring for a loved one with a terminal illness at home, required a community. More specifically, they discussed the importance of having two networks of support – core and outer.

Horsfall said the notion of two networks of informal support was not one the researchers had anticipated, but it was a persistent theme from participants.

The core network typically consisted of the primary carer, family members and close friends. They could be relied on to provide whatever was needed; emotional support, food. The outer network, made up of other friends and work colleagues, could be called on for other assistance, such as dropping children to school or doing shopping, she said.

Another theme to emerge centred on the need to avoid social isolation. Participants talked about the importance of technology in facilitating this connectedness, as well as good communication and humour.

Horsfall said participants were very conscious they risked becoming isolated as they cared for their loved one at home and they actively tried to counter it.

The diversity of caring tasks was also raised by the focus groups. They discussed the importance of people providing assistance that was needed, as opposed to that which was merely perceived as being helpful.

“Where it worked best was when the people in the core network were able to be quite assertive; to articulate what they did or didn’t need. The diversity of tasks was enormous. There were some pretty clear things that were essential; food was really important for everybody, transport, people to do the shopping, looking after the garden,” said Horsfall.

One of the more pertinent findings was people in the caring networks typically did not the value of what they had done, she said.

“People thought they weren’t doing anything special. We think that by documenting what people are doing we can encourage, strengthen and support that work,” said Horsfall.

“The danger is when it’s invisible, people do become isolated and it does become a burden.

Whereas when we make it visible and we talk about how important it is, it’s less likely to be a burden because people are going to be supported.”

The paper points out previous research had mainly focused on the burden experienced by people as they care for terminally ill relatives at home.

“It can be a burden if people are left to do this on their own,” said Horsfall. “But if they’re supported to develop a network or use their network then it’s less of a burden. Nobody [in the study] mentioned the word burden. They talked about it being a privilege; there was a lot of joy involved; they talked about love. [That] isn’t spoken about much in the literature,” she said.

Do you have an idea for a story?
Email [email protected]