The rewards of studying end of life

When we were asked to design a study for Macmillan to capture the experiences of people nearing the end of life, it’s fair to say we spent slightly longer than usual in the planning stage – keen to approach all aspects of the project with sensitivity.

Our focus was on the barriers to planning for end of life (or ‘Advance Care Planning’ as it’s known in some contexts). Top of our list of worries was that people just wouldn’t want to talk about this – meaning we’d have to work twice as hard to elicit responses.

What we weren’t prepared for was the overwhelmingly positive response – both to our project, and to the idea of planning itself.

If people hadn’t planned for end of life or heard of ACP, it wasn’t because they couldn’t see value in it. Still less was it because they didn’t have wishes they wanted to be recorded.

In many cases they simply weren’t aware there were certain decisions they could control; or they assumed that someone, somewhere, would talk to them about ACP when the ‘time was right.’

What was really rewarding was how the research itself prompted those at the end of life to start thinking about their hopes, fears and wishes. In the hours and days after leaving their homes, we found that many people began to process and think deeply about what plans they could or should make. Lacking any other meaningful outlet, they used the research exercises we’d developed as a way of formulating and expressing their wishes.

Through phone calls, WhatsApp messages and even ‘selfie’ videos, it became clear that one of the main barriers to planning for end of life was less the ‘taboo’ of death, and more the lack of an appropriate infrastructure for patients to express wishes in a way that reflects their actual decision making processes.

Our research demonstrated how people don’t tend to make their most meaningful, personal decisions within the four walls of a doctor’s waiting room – or even when presented with all of the possible options by a researcher in their home.

In reality, it’s impossible to know when or how different individuals will want to express their wishes.

What matters is that they’re given the tools – and the flexibility – capture and share these wishes at the right time, and in the right way, for them.