Applying design principles to end-of-life care: Could you design One Good Death?

Meet Norman.

Norman is 89 years old, and has lived in the same house for 50 years. Norman’s daughter visits him regularly with her dogs, but after his wife passed away last year he’s become more and more socially isolated. Now, his day revolves around medical appointments. Norman has a predicted lifespan of 6 months.

How would you design a good death for Norman?

There’s a workshop for that.

Recently I was invited to join a workshop to apply the principles of design to end of life care and ‘design’ one good death. The One Good Death Workshop was hosted by Bolton Clarke and RMIT as part of the Engaging for Impact program, which this year has a big focus on the future of care.

Matiu Bush, Innovator in Residence at Bolton Clarke, opened the session by explaining Bolton Clarke’s approach to mapping people’s end of life journey, and outlining the goals of the workshop.

“The concept of a good death is one that recognises the whole-of-life contribution of people living in aged care, or in the community, as they near the end of life. Through focusing on one good death we hope to break this wicked problem into a number of smaller, more personal experiences that participants can address through empathetic design approaches. By designing one good death we hope to promote an approach that can be scaled to help many families” – Matiu Bush

As my fellow participants were introduced I began to notice the diversity among people in the room. There were artists, architects, designers, academics, aged care providers, funeral directors, startups, advocates and representatives from peak bodies and the Victorian Government. I suddenly had an appreciation of how people’s end of life journey involves navigating a complex system.

Adam Jahnke at the One Good Death workshop

Adam Jahnke at the One Good Death workshop hosted by RMIT and Bolton Clarke

Using empathy to design One Good Death

To design one good death, the group used a process developed by Leah Heiss, a Melbourne based designer and lecturer at RMIT. We used different tactile shapes to represent Norman’s goals, roadblocks to achieving those goals and potential workarounds. By the end of the workshop we had developed a ‘pathway’ to a good death for Norman.

The greatest workarounds were achieved when teams stopped looking at end of life through a “medicalised” paradigm and instead empathised with the personas and their needs. For some, a good death involved appointing a professional ‘death champion’ to advocate for them. For others, it required a facilitated family conference alleviating the worry around family conflict. For one of the personas, it was simply being assured his cat would be looked after when he died. Technology was referenced a few times, but it was always with the intent of enabling a specific outcome for a person.

How would your loved ones like to die?

Using personas and design principals is a different approach to developing end-of-life care, which was a highly debated topic in 2017. Last year, the Victorian Government passed legislation to enable assisted dying for a small group of Victorians suffering from an incurable illness and living in intolerable pain. Among my peers, I’ve noticed that many people come to support the legislation after witnessing the death of a loved one. In fact, it was the death of Premier Daniel Andrews’ father that changed his mind on assisted dying. It’s confronting, but considering how the people we love would like to die fosters empathy with those in end-of-life care. As the One Good Death workshop showed, this might be the key to designing and ‘scaling’ one good death.

Congratulations again to RMIT and Bolton Clarke. The workshop was truly an innovative approach to end of life care; I’m looking forward to seeing the outcomes and bringing the process of ‘roadmapping’ the ageing experience to Umps Health’s product team.

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