Embracing end of life through death cafés

How Tasman Peninsula residents are embracing death literacy through community coffees, crafts, and conversations about end-of-life care

As her husband Stan’s life drew to a close five years ago, Tasman Neighbourhood House volunteer Karen Zabiegala embarked on her own journey – to learn everything she could about death, dying and the burial process. 

Now she is drawing on her knowledge and experience to help others in her local community have the confronting and challenging conversations needed to improve their own death literacy. 

“I looked after Stan at home at the end of life, and then kept him at home for three days on ice,” Karen says. “Then we wrapped him in a shroud and put him in a coffin that my neighbour had made. 

“Then we carried him across the road to the cemetery from the house he’d lived in for 41 years. We didn’t have to take him off the Peninsula. We could do it our way. 

“Stan was a much-loved member of the community and it was like all the village came together to say goodbye to him. 

“People talked about how wonderful it was, and that it was the best funeral they’d been to.” 

This experience led to Karen, who would go on to win the Palliative Care Volunteer/Carer Award at the 2023 Tasmanian Palliative Care Awards, becoming the driving force behind the Tasman Peninsula’s ‘death cafés’ – a series of events designed to facilitate conversations around death and dying and arm people with the knowledge they need. 

Funded under a joint Primary Health Tasmania/Tasmanian Department of Health grant program, the death cafés feature guest speakers discussing end-of-life practices and beliefs from different cultures, with topics including natural burials, being buried on your own property, cremations, advance care directives, and local palliative care services. 

Volunteers can also be trained to help locals with documentation and services relating to end-of-life care. 

“I felt like people needed to know that you can actually do it yourself,” Karen says. 

“Because I was so well supported by this community, I feel I have to pass that on – not only the knowledge, but also the support. It’s like ‘it takes a village to raise a child’ – it takes a village sometimes to bury someone. And it’s so much nicer if you’ve got support. 

“It’s an absolute honour to help people at the end of life, to assist families and guide people in how you can keep the body, how to wrap them in a shroud, how to bury them. To own that process is very powerful, and there’s such a beauty in it.” 

The death café events feature shroud-making workshops run by Peninsula textile artists including Joi Heald and Poss Chard, with local botanicals – often sourced from participants’ own gardens – incorporated into the lovingly crafted silk, wool and calico burial garments. 

“Getting the six artists involved and having a different speaker at each café has worked well,” Karen says. “There is a good variety of speakers and poets and presenters. 

“The two shrouds we’ve completed have been used, and we’ve got more orders because people are keen to just be buried in a shroud, which you can legally do in Tasmania now.” 

“With both the shrouds we made, everyone contributed. There was so much love and energy put into that – especially when we did Jeff’s.” 

Popular local sailor Jeff Stander was laid to rest in one of the shrouds when he passed away recently after an “adventure” with cancer. He and his partner Kathy Beatrix Perkins had been regulars at the cafés in the months leading up to his death. 

“I don’t think I could have done it without all of the community,” Kathy says. 

“The death cafes allowed us to make the appropriate preparations and at the end, when I was laying with Jeff in his bed, I had the peace of knowing that I knew what to do. 

“That’s so important for families – they don’t want to be left with those decisions.” 

Interest in the death cafés has greatly exceeded expectations, with Karen fielding calls from across Tasmania and interstate. 

Numbers had to be capped at 40 for the first six events, which were held at the nearby Saltwater River Hall and were fully booked. 

Death cafés are still held monthly at Tasman House in Nubeena, and house coordinator Jack Webb says they will continue “as long as there’s a need”. 

“We’re an ageing community, so it makes sense,” he says. 

“There was a huge need in the community. People had been asking for death literacy information for a long time, but we’d previously had to tell them that we didn’t have the resources to do it. So when this grant came along we jumped on it. 

“I think people are now more informed than they were previously, and they’re more vocal about their ideas. 

“We’ve broken down some of the taboos around death and dying just by sharing stories, and it has encouraged people to reclaim that process. It has normalised it, which is really cool.  

“As a Neighbourhood House we want to give people opportunities to create the sort of community they want to live in.” 

Palliative care grants program

In 2023, a grants program was launched to build better awareness and understanding of palliative and end-of-life care, and to improve the quality of care. 

The grants program was an initiative of Primary Health Tasmania and the Tasmanian Department of Health, with funding from the Australian and Tasmanian governments. 

In round one, six care and support providers were awarded grants to improve the quality of services for people living with a life-limiting condition. 

In round two, a further 10 grants were awarded to local not-for-profit community-based organisations to help build social connections and facilitate opportunities for conversations around the topics of death and dying. 

In the next few pages, we explore two of the projects funded under the grants program – projects which continue today. 

This story features in Issue 18 of our Primary Health Matters magazine. Click here to read the rest of the issue.