In 2017, I was sitting in a workshop with a group of nurses and allied health professionals and at one point I had cause to ask them, ‘what do you ask a family when you know someone is dying?’ One of the first responses was, ‘what funeral home will we call?’… And that is where the disempowerment around death starts for many families. One simple question at a vulnerable moment erases all possibility of there being any other option.
I think one of the biggest misconceptions around dying and death has to do with agency and choice. The level of death literacy in the Australian community is not yet at a place where people are comfortable with the discussion of death, nor are they aware of all of the options available to them; our way of dying does not otaften afford people access to the full complement of information needed to make truly informed choices. This is only made harder by the limited opportunities we are given as a society for real, honest, and open discussions around end of life.
How to start the conversation about dying and death
To approach healthy and informed end-of-life conversations a person first needs to find their way ‘in’ to the subject, a way to start the conversation about dying and death at a tolerably comfortable level, which is something that can often be elusive. In my experience, people are often more easily engaged in death discussions when they approach them as abstract topics rather than as an event related to their own mortality or that of a person they love. It is easier to begin to think about dying and death when it is not quite so real, and long before it is needed.
Once a person finds their way ‘in’ to the space of dying and death, exploring the range of agency and choice can be similarly difficult. As the old saying goes, you do not know what you do not know; the range of agency and choice available to a person can only be dependant on the information presented to them – this has been historically lacking and somewhat problematic. You cannot make an informed choice when you do not even know what questions to ask. It is this lack of agency and choice that is currently being challenged.
Community responsibility of death care is a faded tradition
In the past 100 or so years, we have lost more than 5000 years of knowledge about caring for our dead. Death care – the how-to of caring for those who die – had always been a shared community knowledge, a responsibility that we as a society freely undertook. Even in my grandmother’s lifetime she remembered taking food to houses of her deceased neighbours where, as a community, they would grieve, mourn, care for, and spend time with the deceased. In many places, there were community elders who would come and attend the dead, but in the West this is an all but faded tradition now.
In the process of our world becoming the professionalised industry supporting machine it is today, the responsibility and acts around our dying and death have been surrendered to experts. There are of course many contributing factors to this and it is absolutely true that we, in the West, live in a fast-paced society where many aspects of our life are outsourced; this is a concept that people are only more recently beginning to question. I don’t say this as a criticism, but rather an acknowledgement of simply what is. And while this may be the way of the world, it has resulted in a loss of knowledge, confidence, and belief in our own human capacity to care for each other at end of life.
How do we find agency and choice in our modern way of dying and doing death?
One of the most promising introductions to this space, and alongside the dozens of death disruptions that have entered this space in the past few years, are the growing group of end of life doulas, consultants and ‘deathwalkers’ who come into this space with the collective desire to better the dying, death and bereavement outcomes for their fellow community members. These people work to support the dying and their families but in addition, they educate their communities and often their local service providers and health care workers; providing advocacy and options in spaces where they may have been previously unknown.
Along with doulas providing public education, there are death cafes, not for profit organisations, training courses, workshops, advance planning seminars, information services and networks. All of these platforms for people to seek information are more readily accessible now than they have ever been. And education is key.
Another way to raise the death literacy levels in our communities is to educate our medical communities. By skilling up allied health professionals, our care homes, hospices, palliative facilities and hospitals; we end up with a front line of people who are in a good position to impart this much-needed information to families, presenting a complete set of options to people in their most vulnerable moments.
Providing the platforms for people to seek out knowledge and gain back the skills that were surrendered decades ago is central to raising the death literacy levels in our communities. There is a multitude of education offerings and opportunities in Australia today and together they are all working towards a more death literate community. Already we have seen the benefits of this in the rise of DIY approaches to end of life and the steadily growing demand for dying at home, home funerals and family-led services.
There is a long way to go yet, but the misconceptions around death and dying that perpetuate the industry norms we have come to be so familiar with are being challenged. Arising from those challenges is a greater level of end-of-life agency and options within our Australian communities.
ABOUT BEC LYONS
Tasmania’s Bec Lyons is an end-of-life doula, independent funeral director, Natural Death Advocacy Network (NDAN) President, and Australian Churchill Fellow. She also runs You n’ Taboo with her partner – a group dedicated to death literacy within the community. Bec is passionate about providing honest conversation, resources and support to people and their families as they approach their end of life.
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