Death has become increasingly institutionalised over the past 60 years, especially in Australia. While 60-70 per cent of Australians would like to die at home, only 14 per cent do so – half the figure for countries such as New Zealand and France, and much lower than Cyprus, which tops 40 per cent.
Half pass away here in hospital, and one-third in residential care. A UK study found that a dying person would see, on average, 28 doctors in a year.
Even when the individual wants to die at home, families can be divided, particularly since most adults now have full-time careers and can’t provide the care required. Living in a more secular society means that while most families would once have worried about the salvation of the individual, praying with them to find peace, many are now likely to be pursuing the medical options of prolonging an individual’s life, even for a precious few weeks.
As a result, much of our death literacy has been lost. Here are some ways to help a loved one approach their final days.
Acknowledge your own grief
Somebody who wants to keep a dying person company needs to overcome any fear of talking about death and grief. Michael Barbato, a former palliative care physician who designed the Midwifing Death Correspondence Course, says: “It resonates with the other person if we can be vulnerable. It’s about being as authentic as they are, but not taking centre stage.
“Often the person who is dying will preface an important conversation with a prolonged silence, and our job is to be comfortable within that silence, because they are processing things at a deep level.”
Don’t disregard their dreams
Barbato’s workshop at next weekend’s Festival of Death and Dying (deathfest.net) in Sydney will be about the unusual language and experiences of dying patients. “About 90 per cent of people will have an end-of-life dream or vision, and it has enormous healing potential,” he says.
“If we immediately attribute it to delirium, hallucination or drugs, we are missing its significance and the need of the person to talk about its message. Being able to share it can be a great opportunity for them to move from a state of fear to a sense of peace.”
Reinforce the person’s identity
In medical surroundings, a dying person can be diminished to a diagnosis, so companions should reinforce what they love about the individual. Efterpi Soropos is a lighting designer in the performing arts. When her mother died, she decided her surroundings of harsh lights and beeping monitors could be improved on. She went on to create “human rooms”, immersive environments of light, sound and video designed to lower stress and anxiety for the dying and their families.
On a simpler scale, we might bring an oil atomiser into the room, create softer lighting and play the individual’s favourite music. Giving gentle hand massages is a literal human touch.
Plan your own end-of-life experience
Australia’s GroundSwell Project aims to build people’s capacity to deal with death. Its executive director, Jessie Williams, advises, “Start by reading books like Being Mortal by Atul Gawande. And start having conversations about the end-of-life experience you want to have. You’ve got living to do while you are dying, so think about it when you are well.”
While high-street funeral directors are still easy to access, independent funeral providers are becoming more popular, as are “death doulas”. Williams – who like Barbato and Soropos will appear at the festival – also recommends agencies such as Picaluna that can help design a funeral that’s more like a party – one you attend before you die.
“It can be empowering when people lean into their own mortality,” she says. “To die with your wishes fulfilled colours the experience for those left behind.”
• Seek counselling or regularly debrief with someone trusted.
• Ask for emotional and practical help.
• Give yourself permission to grieve. Nothing is inappropriate.