February 2023
Death is a very personal experience, and also a very social experience. My death will touch others’ lives just as their deaths will touch my life. When death does come, what would you want that last experience to be?
Followers of the world’s religions have long been encouraged to prepare for death, physically, mentally and spiritually. Judaism, Islam and Hinduism all prescribe rituals for praying, mourning, and preparing a body for burial. These rituals reflect respect for the person in life and for the spirit in death. Aboriginal and Torres Strait Islander Australians, as many other Indigenous communities, also have ancient cultural practices which guide communities in the rituals surrounding dying, mourning and bereavement. Christianity and Buddhism each have medieval texts guiding the faithful in preparation for death and the afterlife.
In our 21st century world, we are not generally exposed to the reality of death as our ancestors were, although the Covid-19 pandemic recently provided a window into that experience for many of us. As a result, death can seem fearful to some. Many individuals and organisations around the world are seeking to address that fear and to reintegrate death’s place as part of life. For instance, in the US The Conversation Project seeks to normalise discussions of death by encouraging people to have the conversation about what they want at the end of life, providing resources, stories and information as well as a network of ‘conversation champions’.
There is considerable research around the world into the importance of talking about and preparing for death. However, although recent research found that a majority of Australians believe that end-of-life planning is important, far fewer have actually made an end-of-life plan or talked with loved ones about their preferences for the end of life. Yet another Australian study has shown that people who were aware of their options for end-of-life care, who had discussed their preferences with others, and who received palliative care were more likely to have had a positive experience of death. An earlier, randomised controlled trial in the US demonstrated that having a lay worker discuss end-of-life preferences with people with cancer improved patient satisfaction with care, increased advance care plans, and lowered hospital costs through reduced emergency admissions.
Palliative Care Australia, the national peak body for palliative care, has supported a number of initiatives over the years including a discussion starter resource. This resource aims to help people have a conversation about end-of-life wishes. Their campaign, Palliative care: It’s more than you think, also provides information specifically about palliative care and its benefits.
The Groundswell Project was established in Australia to reduce the stigma surrounding death and dying. Their annual campaign, Dying to Know Day, has encouraged many Australians to have conversations about death and dying, and provides resources and information to help people to plan their deaths and articulate their preferences for death.
The Centre for the Art of Dying Well in England is dedicated to “helping people to live and die well and be supported in their grief”, providing practical information and advice, informed by the Catholic faith. The Centre’s 2021 report on The internet and the end of lifeshone a light on the increasing number of online forums where people are discussing their views, fears, hopes and experiences regarding dying, death and bereavement. The analysis demonstrated the great desire many people have to be honest and open about impending death, rather than avoiding the topic.
Death is a social process. Resources such as these can help all of us talk with those we love about the process of dying so that when the time comes one’s wishes and preferences for care are known. This can be beneficial for the person who is dying as well as for those who are left behind.
Have you had the conversation? Now might be a good time.