Designing for death: Love project or legacy of stigma?

4 years ago
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Detection and monitoring systems. Non-intrusive wearable devices. Carer apps. All reflect tech’s growing role in aged care. Technology and design also have a presence in the space of death and dying.

You may have seen this news item. In 2019, a major US institution, attempting to recover from a botched interaction with a vulnerable patient, apologised to the family. The statement said: We don’t support the use of technology to replace the personal interactions between our patients and their care teams.

This wasn’t the impression the family had when their dad got news of his condition, and implicitly his impending death, from a tele-robot doctor. 

Here’s another story 

Two sisters with no clinical experience are laying out their mum’s body, following instructions on a mobile phone. ‘It says place a small soft weight to keep the eyes in position,’ says the one. ‘Awesome, I’ve got my lavender eye pillow in my bag,’ says her sister. Spotify is playing the mother’s favourite, a Strauss lieder.

In this story, we glimpse a significant trend in the ‘death industry’, that is a movement back to home based nursing supported by home palliative care, followed by family care of the body, vigils and services in the home setting. Covid-19 has changed conditions, but experienced guides can still facilitate ‘being in touch without touching’.

A cultural shift towards seeing death care as comforting rather than confronting is marked by organised events where people can talk about death. There’s Death Café and Death over Dinner. And there’s D2KD (Dying to Know Day/s) in August every year. These activities are growing in popularity in the community. Yet there is limited take-up in aged care. The sector’s paramount PR message is about wellbeing. This may stand in the way of open acknowledgement and discussion of death.

Talking about death isn’t easy for many families. It can be challenging for staff. In ‘designing for death’, the key philosophical question is: is the design intended to help people to avoid or embrace death? Portable, a tech innovation company in Melbourne is involved in R&D on the future of death and ageing. Its CEO, Simon Goodrich, is motivated by the company’s work to make death easier to handle. Portable’s report ‘The Future of Death and Ageing’ (2018) which explores death through the lens of user-experience is relevant to anyone in government and the private sector.

At the Portable advisory group for this work we speak of being ‘death positive.’ The language we use to talk about death reflects our way of thinking about it. The way we talk about death has a big influence on how we, and those we talk to feel about it.

I support people as they approach end-of-life. I run Death Cafés and workshops, ‘Death Matters’. I see how few people are equipped with good information on practical aspects of end-of-life, including advance care directives, wishes for the deposition of their body and funeral costs. 

The term ‘love project’ in this opinion piece’s title highlights the emotional (love) and practical (project) considerations at end of life. This introduces warmth and practicality. The key design guideline is to avoid rushing. Otherwise communication is very difficult. Poor decisions can result. Rushing pushes grief away, and makes things harder later for the bereaved, and in aged care, staff.

Death is an undeniable part of life and work in residential aged care. A legacy of taboo and stigma influences practice and culture. The departure of those who have passed away at the facility may be furtive. Sometimes residents who have died aren’t talked about again.

Aged care groups with spiritual affiliations are well placed to offer rituals. Meaningful Ageing Australia has a useful workshop that prepares staff to take care of rituals, their own self-care, and different cultural understandings they may encounter.

Can human-centred and speculative design make a difference to someone dying in aged care, or to those working with dying people and their families now and in future?  Yes, we’ve seen how In the complex circumstances of Covid-19, alternatives such as use of Facetime and monitors to enable families to be close to a dying loved one have helped so much.

Yes. Humans generally care about sick and dead bodies, even though death can easily scare us. Design and technology have a role in aged care settings and in the death space. When the intention is to help people embrace death, the outcome is likely to be more sensitive. When organisations avoid addressing and designing for death, the trade-off is that people shut down, feel sad, and get depressed.

Death can be a love project when coherent design approaches regularly remind residents (and their families) that living and dying in the place where they live is going to be fine.

Dr Annie Bolitho is Founder of Kinship Ritual and author of Death, a Love Project