doing death better

End-of-Life Planning Portal

A hypothetical service design project for the Department of Health and Human Services

We’re not very good at death in Australia. It’s a taboo topic for many people. A lot of us neglect to plan adequately for the end of our lives. Conversations happen too late or don’t happen at all. But we’re all going to die, so this is something that affects all of us.

For example, most Australians die without a will. This puts a huge emotional and administrative burden on loved ones and can cause massive family conflict. Specifying even basic wishes can have a big impact to facilitate a smoother departure.

We are all end users in ageing and death.
—The Future of Death and Ageing in Australia:
A Portable R&D Initiative, Portable, page 11

standing on the shoulders of giants—

Design agency Portable released a self-initiated report, ‘The Future of Death and Ageing in Australia’ in 2018. They outline opportunities for further exploration and make a series of recommendations. These include thinking about and planning for one’s own death, improving our death literacy, and writing a will. Commonly, end-of-life planning is entwined with old age and palliative care. But we are all aging, no matter how old we are, and we are all end users of death.

COVID has brought an increased awareness of our mortality and the consequences of death. In March 2019 when the pandemic first hit Victoria, online will-writing services with State Trustees and Safewell saw a jump of 265% and 300% respectively in people wanting to get their affairs in order.

the design challenge—

My initial hypothesis was that if we could help young people who are busy enjoying their lives prepare in advance for the end of their lives, we’d all have the opportunity to die with our affairs in order.

I wanted to understand people’s attitudes and experiences with end-of-life planning through user interviews. I spoke to Pre-Planners, Non-Planners, and people who had helped a loved one plan at the end of their life, called Twilight Planners. People shared deeply moving stories and personal reflections. It was a huge privilege to listen to and I had to choke back tears a few times. I felt like I’d been granted access to a sacred space of confronting our mortality and the journey of leaving this earth.

It turns out that those who had done some planning generally found it confusing, overwhelming, and disjointed. Desktop and auto-ethnographic research confirmed that there is no definitive process, no central point of truth and no clear instructions.

People don’t know what they don’t know. They don’t know what’s required. And they have no idea where to start. Often it’s easier to do nothing.

There’s no point trying to get young people to plan early if the planning process is terrible.

“My mum wrote something on a piece of paper.
I said to my mum, ‘I think you need to do the actual paperwork.’
She said ‘Oh no, that’s enough.’
I said, ‘No, that’s not enough.’”
—user interview

MAKING SENSE OF THE MESS—

Mapping the current state in a service blueprint was challenging because of the disconnected current services and the many variables between individuals. The tasks they completed and how they completed them differed vastly between users.

However, synthesising the research was a huge turning point. Affinity mapping, personas, empathy mapping and user journey mapping helped to identify common pain points and opportunities. The key opportunities were centralising information and forms, using simple language, creating a step-by-step process, and creating flexibility for updates.

User Journey Mapping
How might we help people 'get their affairs in order' easily and efficiently?

the design challenge 2.0—

All of a sudden the path seemed clear. The goal wasn’t to get people to plan earlier, it was to help people get their affairs in order easily and efficiently. It was to reduce the emotional, mental and administrative burden of end-of-life planning. To help people make informed decisions. To ensure plans are comprehensive, current and accessible when required.

IDEATION—

At the intersection of the double diamond, defining a user’s ‘Jobs to be done’ helped to set a service vision. Thinking about a user’s motivations informed the ideation process. What are they trying to achieve? What is important to them? Why?

Then take a breath, prepare to leave the comfort of clarity, and start sketching—ready to embrace the mess of divergence again.

Crazy Eights Sketching

refinement—

Mapping ideas on an Impact/Effort matrix helped identify concepts that met the objectives best. These all took the form of a digital solution that provided guidance on the planning process, supported decision-making or helped users document their wishes.

The end-of-life planning portal—

The strongest concept was the End-of-Life Planning Portal. It’s an online portal where you can complete the tasks required to plan for the end of your life, all in one place. It provides information to make informed decisions and centralises all the forms. It connects existing services like the online questionnaire MyValues for determining medical treatment wishes and State Trustees for wills and nominating Powers of Attorney.

End-of-life Planning Portal Prototype

putting it to the test—

I tested a lo-fi prototype with users between 20 and 70 years old including Pre-Planners, Non-Planners and Twilight Planners, as well as an oncology nurse who sees patients die every week.

I created several iterations through testing, making simple changes when I kept hearing the same feedback.

Yes it’s nerdy, but I felt this rush of excitement when people liked it.

It hit the mark with the basics—it was clear, straight-forward and user-friendly. It broke an otherwise overwhelming project down into manageable chunks. Thinking about death was still confronting for some people, and completing everything is still a big job, but it felt a lot more manageable.

Would you use this?
"Shit yeah."
—user interview

Moving forward—

After synthesising feedback from user testing and creating a future state service blueprint a few key areas of concern emerged. These included security and privacy, the ability to customise the priority of tasks and promotion. Making the service accessible for people with diverse needs including culturally and linguistically diverse users is also important.

Wouldn’t it be amazing if all Victorians had the opportunity to plan for a good death?

After all, we’re all going to die. Let’s do death better.

Future State Service Blueprint
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I respectfully acknowldge the Wurundjeri People of the Kulin Nation as the traditional custodians of the land where I am fortunate enough to live, learn and work. I honour and pay my respects to elders past, present and emerging.

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I’m currently hunting for a new opportunity to make awesome things happen with other people who care about people.

I'm based in Melbourne, Australia and am open to local or remote work.

If you think we’d be a good fit, let’s chat.

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