Compassionate Communities: Volunteer group reducing social isolation for terminally ill patients expands

“It’s amazing being greeted at the door by somebody who’s absolutely delighted to see you, knowing they won’t be seeing or speaking to anybody else that day.” That’s according to Toni Jacobson, one of the dozens of volunteers involved with the Compassionate Communities program — a group working to reduce social isolation in the final months of a persons life. “Connectors” work by visiting palliatively ill patients and providing support like helping with grocery shopping, gardening and finding suitable social activities. At other times, it’s as simple as sitting together in silence over a cup of tea. Compassionate Communities co-founder Professor Samar Aoun said she kick-started the program in Bunbury in 2019 after noticing a void in free, community-led support. “I felt like there were better ways to be helping the community and caring for someone who’s dying or has a life-limiting illness,” she told The West Australian. “People do not have the confidence to help each other anymore . . . the community is not coming together the same way it used to in the olden days. “The idea of the program is to build up the capacity of people to help each other and encourage people who need help, to ask for help. “People do not feel like they can (ask for help), they feel like they need to be brave and stoic to their own detriment. When people say no to those who are offering help, they shut down all social networks around them.” Unlike other volunteer groups, the Compassionate Communities program has a more laissez-faire approach, allowing volunteers to be flexible with their time and help out when they can. “They’re not volunteers in the traditional way whereby they come at nine on Tuesdays and Thursdays . . . it’s about helping your friends in the community,” Professor Aoun said. “If you’ve got time, you pop in, and if you don’t have time, you don’t pop in . . . it’s back to the organic, natural way of helping each other.” Ms Jacobson, 78, has been a Compassionate Communities connector for about four years and says the program “is not rocket science”. “It’s about caring for other people and what’s happening to them, like asking if somebody has put your bins out for you . . . because sometimes these people won’t see another person for the rest of the day,” the Geographe resident said. “They are all such lovely people, and just because you’re old and you’re forgetful it doesn’t make you boring . . . so many people are very lonely.” Ms Jacobson recalled one of her “favourite” clients; an elderly lady in Nannup who she would deliver home-cooked meals to. “Nannup is one of those isolated towns where there are not a lot of services but a lot of older people,” Ms Jacobson said. “She was very, very special . . . she was always delighted to see me.” One patient spoke about how the program had opened up her world. “If you can imagine a fully blown up football . . . that was my life, (but) it now feels like a golf ball,” she said. “Thanks to the program I can see my golf ball is sort of growing a tiny bit more, maybe to a tennis ball size.” Another patient said the program had given her more reasons to push themselves. “There’s a level of accountability if somebody’s coming to see you . . . you’ve got to get up, get dressed and you’ve got to face the world,” they said. “You can’t just lay curled up in your bed all day.” And it’s not a program designed specifically for those in old age. Ms Amour spoke of one instance where the Compassionate Communities program connected a family of young siblings with a group of “surrogate grannies” while their mum went through chemotherapy. “The mum couldn’t send her kids to day care because of the germs . . . so this connector organised a group of surrogate grannies,” she said. “She contacted her friends her own age who were in their 70s and said, ‘look, can we have your support and go look after those kids in their home so they don’t have to be outside and bring in any germs while the mother is unwell?’” Lotterywest has since funded an $800,000 grant over three years to help upscale the Compassionate Communities program through Western Australia. “Lotterywest is proud to play a role in helping the Perron Institute for Neurological and Translational Science upscale the program and to create an online learning hub so other communities and organisations across WA can develop their own creator hubs,” Lotterywest chief executive Colin Smith said. “The three-year program will extend existing services and provide training for volunteers to be better placed to support each other.” Darlington local Shane Bailey will be one of the dozens of new connectors joining Compassionate Communities in 2025 as the program expands throughout the Perth metropolitan area. “When someone has a terminal illness, about 90 per cent of that person’s time is spent in the community . . . but that is a whole lot of time that generally, as a society, we haven’t really considered,” she said. “During that time, a person’s quality of life can be less than it used to be . . . (the program) is as much of a win for the person who’s receiving the support as it is for the person who’s giving it, because there seems to be something innate in us humans that we want to feel helpful. “We have a shared responsibility to look after each other, because the way that society has evolved means that illness and dying has become medically-focused and we’ve lost the skills on how to support and be around someone who’s actually dying.” Ms Bailey said the program also aimed to improve the way in which death is talked about so that patients could feel a “degree of acceptance and comfort” in the final weeks of their life. “We plan about what we’re going to wear, we plan for weddings, we plan for births . . . we plan for all these milestones in life, and death is another milestone we’re going to reach,” she said. “We’re often quite fearful about our own death . . . and we will probably always have some degree of fear, but the more we have conversations about it, we can begin looking at it like, ‘how do I want to approach this?’” Despite 70 per cent of people wanting to die at home, only 14 per cent of palliatively ill Australians are able to do so. “We do not need to die in hospitals if we have a community that is death literate,” Professor Aoun said. “Death is a social event with a medical component, it is not a medical event with a social component . . . we need to reactivate our social networks to be able to provide that support.” Professor Aoun said for some the recent festive season would have felt especially isolating, and urged Australians to reach out to elderly people in their own communities and “sit with them and just have a chat”. “I cannot emphasise the importance of having a warm body next to you . . . talking with you, smiling at you,” she said. “You don’t have to say anything, it’s just about your presence and being with them in their loneliness and in their grief. “If you don’t know what to say . . . just offer something in a tangible way that shows that you love them and that you care about them.”