The first Redesigning Deathcare Conference was held in Melbourne, in person and online, from 27-29 October. I learned about it late and decided to attend remotely. I’m glad I did; it was a fantastic event and a terrific way to help bring October, the month of Halloween, ancestors, and Hecate, a Greek goddess associated with the dead, to a close.
The theme of the Redesigning Deathcare Conference 2022 was ‘How might we reimagine the future of deathcare?’
Deathcare refers to the total system for responding to death. It’s a vast space that includes advanced care planning, diagnosis, ageing, end-of-life, body disposal, and bereavement. Deathcare involves many people across different professions, such as health professionals and funeral directors, and academic disciplines, such as medicine, anthropology, and law. As you can imagine, all these people don’t always talk to each other. Reclaiming Deathcare aims to bring them together. Hosted by the DeathTech Research Team, a group of anthropologists, social scientists, and human-computer interaction specialists at the University of Melbourne and the University of Oxford, Redesigning Deathcare “invited contributions from diverse perspectives to collectively imagine and build a holistic system of deathcare”.
The program had seven sessions, with 2-3 streams each, and each stream had a few presenters. Each presented spoke for about 15 minutes, and there was time for audience questions at the end. There were also three keynote speakers and some social events.
All the streams looked interesting, and I wish I could have gone to all of them. They covered a range of subjects, such as voluntary assisted dying, cemetery technologies, trauma, diversity and inclusion, education, and even animal companion death. There were speakers from Australia, the US, England, Ireland, the Netherlands, and Poland. Here are some highlights and learnings
We have good intentions but don't plan
Many of us have at least a sense of what we want and don’t want regarding medical interventions or at end-of-life. We know if we wish to be buried or cremated and what kind of funeral we want, and we agree that wills are essential. But we don’t plan. Only 14% of Australians have an advance health directive. As much as 70% of Australians say they’d like to die at home, but only about 14% get to do so.
We are uninformed and misinformed
In Australia, the legal requirements around death are few, but the traditions are many, and these are often passed off as necessities. For example, most people don’t know that you may be able to die at home, keep the body at home, have a funeral at home, and have a natural burial in a simple coffin or shroud.
Caring for our dying and dead at home may sound unusual or even morbid to some people, but this is what we’ve done for most of human history. The funeral industry emerged in the 20th century, and the result is that we’ve lost our knowledge of deathcare and family and community rituals. Not only that, we’ve grown so afraid of death that even talking about it can be taboo.
There’s nothing wrong with using a funeral home, but people must realise they have choices. There are different kinds of funeral homes; you can use one for various services or just a few things, such as transportation, burial, and lodging legal paperwork.
Funeral homes and cemeteries face challenges
Funeral homes face challenges. Consumer preferences are changing, and people want more flexibility and individuality, more personal and intimate services, are increasingly price-sensitive and wish to purchase online rather than visit brick-and-mortar showrooms and parlours.
According to a funeral experience study, many Australians who have engaged a traditional funeral home have had poor experiences. They felt rushed and pressured or too emotional to make decisions. Later, they didn’t complain because they felt too overwhelmed, like it wasn’t worth it, or were discouraged from complaining.
I’ve been to a few traditional funerals since I moved to Australia in 2012. They were all almost identical, delivered in 30-60 minutes– in, out, next, like a conveyor belt. It doesn’t have to be like that.
Australian cemeteries, which have operated more or less the same way for about 60 years, also face challenges:
- changes in body disposal methods (people are increasingly seeking more sustainable options such as natural burials and human composting)
- environmental issues such as climate change and land supply
- cultural changes such as cultural diversity and secularisation (many cemeteries are organised according to religion, and more and more people identify as non-religious)
- digital sociality (consumers want digital options and solutions)
economic issues such as land expenses and maintenance costs
Some cemeteries are working to transform their spaces to reflect inclusive and diverse needs and offer opportunities for reflection, support, and exploration.
Unacknowledged grief
We all know that anyone can die anytime, but conversations around death are often centred on the elderly and terminally ill. There is a lot of unacknowledged grief in our communities.
Urszula Tataj-Puzyna, a researcher and midwife in Warsaw (Poland), gave an interesting and moving presentation about the experiences of women who continue a pregnancy after a lethal foetal diagnosis. That is, these women know that their babies will be stillborn or die shortly after birth. She conducted the study when women could still choose to terminate a pregnancy due to irreversible foetal abnormality. From October 2021, this is no longer legal. Abortion in Poland is lawful only if the pregnancy results from a criminal act or when the mother’s health or life is in danger.
The results from Tataj-Puzyna’s study show that many women feel like mothers while pregnant and want their baby to be treated as a person with dignity, not a dead foetus. Childbirth is both a meeting and a goodbye; after childbirth, they experience joy alongside pain and suffering.
Historically, we’ve been dismissive of stillbirth (and miscarriage). In general, we probably still are, but we shouldn’t be. These are painful and lasting experiences, and parents deserve the space for rituals and grieving.
Deathcare is heteronormative
Heteronormativity describes how people assume everyone else is heterosexual and think about the world from a heterosexual perspective. It is often an unconscious bias, but it shapes policies and processes, documentation, communications, and more. Examples of this are forms that contain only two options for sex and gender (male and female) or when someone asks a masculine-presenting person what their wife’s name is.
Heteronormativity is one of many barriers that prevent LGBTIQ+ people from receiving good health care and deathcare. Other barriers include:
- past trauma (religious trauma came up a lot)
- the fear of being outed
- co-morbidities
- the lack of training in services
There are a lot of new territories here. For instance, sometimes transgender people with dementia forget they transitioned and reidentify with their sex assigned at birth. Guidelines and training must be developed for caregivers of transgender people with dementia to ensure they get dignified and compassionate care.
End-of-life doulas can help
I’ve recently undergone end-of-life doula training and am now working for Preparing the Way, the organisation I trained under. So, I approach this subject with personal and professional interest.
You’ve probably heard of a doula or midwife, a person that supports people during pregnancy and childbirth, something women have been doing since prehistoric times. At the other end of the spectrum, an end-of-life doula provides support for someone at the end of life.
End-of-life doulas go by many names, including death doulas, death walkers, death midwives, soul friends, or simply companions. ‘Daughter’ also comes to mind, as many women continue to care for their ageing and dying parents. But like the professional midwife, the death doula is an emerging role.
End-of-life doulas came up a lot during the Redesigning Deathcare. It’s a non-medical role, but they can bridge divides and help provide holistic deathcare. They can help people understand their options, what is required and optional, navigate systems, liaise with various other parties, and assist with funerals and after-death care.
This didn’t come up in the panels I watched, but I’ll add that the Australian population is ageing. Our health, palliative, and aged care systems are not resourced enough to provide adequate deathcare for everyone, and end-of-life doulas can help ease that burden.
The challenge has been that it’s an unregulated role. So, while a person may hire an end-of-life doula, institutions, such as hospitals and aged care facilities, will not, but this may be changing. Last month, Preparing the Way launched the world’s first nationally accredited end-of-life doula qualification.
By the way, some end-of-life doulas also provide support around the death of a beloved animal companion. The way we care for the interspecies members of our families is also changing.
Redesigning Deathcare Conference 2023?
The Redesigning Deathcare Conference 2022 identified many issues in deathcare, but it also highlighted good work and showed how to make improvements. It was a diverse and thoughtful event that appeared to run smoothly, especially for a first-time event. Everything was live-streamed via Zoom, and there were only minor technical hiccups that were quickly resolved. I hope they do it again next year.
