For Brendan Moran and his family, talking about his wife’s imminent death was natural and spontaneous. It started when Angie asked two things of her husband – to be cared for at home and to manage her physical pain – and continued right up until her death, three months after the 55-year-old was diagnosed with the rare cancer leiomyosarcoma.

The conversation hasn’t really stopped. In his role as a Violet Guide, Brendan used his personal experience to support other people who are caring for someone who is dying. He hoped the things he learnt while nursing Angie at home will help others navigate this “uncharted territory” and perhaps start their own important discussions about death.

“My experience is that people tend to not want to talk about death. It’s not an acceptable subject for drawing room conversation. I think it needs to be an acceptable subject for drawing room or after-dinner conversation,” says Brendan. “If it’s not, then when we get to the point when we have to deal with death – our own or somebody else’s – then we just don’t have the capacity, we don’t have the narrative within ourselves.”

Brendan’s daughter, Anna Rutherford, who also helped care for Angie along with her two siblings, says there have been times when friends and family have been so uncomfortable talking about her experience of caring for her mother that she has had to “help people through the conversation”. Says Anna, “People don’t know how to speak about death.”

The discomfort is understandable. Over the years, dying and death have become increasingly medicalised, institutionalised and removed from the home, where most sick and ageing people were once cared for by their families. It is now largely hidden from view, in hospitals and mortuaries, which means people don’t know what to expect and are unprepared when they are confronted with death, whether that’s due to a terminal illness or frailty.

Talking about the end of life can also bring up distressing emotions like fear, anger and anxiety. Even doctors and other health and aged care professionals, who are highly trained and skilled, can find these discussions difficult to have with patients and their families. But, as Brendan says, “Death is something that is part of all of our lives. There’s something about living and owning and being enriched by that sadness that needs to be treasured. And if you can’t talk about it, it’s hard to do that.”

Reducing the silence and stigma around death can have profound benefits not just for the person dying but also their family, friends and those who care for them. For Brendan and his children, having open and honest conversations with each other after the diagnosis meant they were able to not only fulfil Angie’s dying wishes to be cared for at home, it also gave them the opportunity to plan and prepare for the outcome.

That process, he says, helped the whole family come to terms with her death. “In our case, the family came together. And Angie joked almost remorselessly, ‘Is this what it takes to get you guys to come [home] to Canberra?’ because everybody was here. Everyone was right around her and that was immensely important.”

Conversations at the end of Life: honesty and openness

(Created with the generous support of the Snow Foundation – watch the who series at “Conversations at the end of life“)

How a Violet guide can help with complex conversations

“They're called guides not because they know how to do it but because they’ve walked a similar path.”

– BRENDAN MORAN 

There are many people you can talk to about the end of life, including your partner, children, family members, friends and colleagues. Health professionals such as your GP, specialists, community nurse, palliative care service or psychologist can also offer support – as can a How a Violet Guide helps .