We’re helping people die well — because dying matters
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Dr Justine Alford, Communications Manager, Institute of Global Health Innovation, June 2019
Stay active. Eat more greens and grains. Drink less alcohol. Detox from digital. Work fewer hours. Take up a hobby. …Plan my end of life care?
We spend so long thinking about how to live well, yet many of us neglect to consider how we can die well. More than 3 in 4 of us say we want to die at home, but half of us in England will die in hospital. There’s a clear mismatch between our wishes and what happens in reality. We need to talk about this, and start opening up the conversation on this emotive but important subject.
“We don’t tend to discuss death and end of life care; people like to talk about getting better,” says Matthew Harrison, senior designer at the Helix Centre for design in healthcare. “But we know people spend much of their last year of life in hospital, more than necessary for medical reasons, through lack of planning in terms of stating what they do or don’t want when they reach this stage.”
Matthew’s one of a team of designers and researchers at Helix who are working to bring positive change for end of life care, empowering people to take charge of this difficult process. They’ve developed a clinical decision-making tool to document people’s preferences for emergency care, when a person is unable to make decisions for themselves. Called ReSPECT, this has been rolled out across NHS sites. Now they’re working on another care planning product, an online platform called Amber Plans, which is engaging even more people in dialogue about death and dying. This work is being carried out in partnership with Digital Care Planning, Helix Centre’s spin out company that aims to make illness and end of life planning mainstream.
“At the moment many people are having these conversations with their GPs in brief appointments, often when they’re facing a stressful diagnosis of life-limiting illness,” says Chris McCormack, CEO of Digital Care Planning. “But it takes time to consider what you want. That’s why we want to get people talking, and being open with their families. Just going through the process of working out your wishes is worthwhile in itself.”
Helix, part of Imperial’s Institute of Global Health Innovation, has spent a number of years exploring end of life care and looking for opportunities to help ease people through this challenging period. The team dedicated a lot of time and effort to better understanding people’s needs, visiting hospices and conversing with clinicians and patients’ families. Amber Plans was born out of this work, which Matthew also has a personal connection with through his lived experience.
“My father developed dementia and I became both his carer and lasting power of attorney, and consequently needed to plan his care,” he says. “Experiencing this in parallel with our work made me truly realise the value of having these discussions.”
Two years ago, Helix and Digital Care Planning held an open day at Helix pop-up studio, where they invited the public to join a card sorting exercise. This tasked people with ranking their preferences for end of life care, alongside their loved ones, based on insights gained through learning from people with illnesses such as Parkinson’s and cancer. “The simple act of sorting leads you to think deeply about what you really want,” Chris says. “And it helped us design various prototypes that would eventually become Amber.”
Much of Amber Plans — now a website and human-like chatbot — works on a similar principle to these early exercises. You’re presented with various statements and scenarios so that you can prioritise what’s most important to you at the end of your life, such as being at home or the ability to communicate with your family.
“I’m thinking about my family when filling this out. It’s great to know they have something to guide them.” — Gemma, Amber user
You’re also tasked with considering how you want to be cared for in the event that you can no longer make decisions for yourself, from the clothes you’d like to be dressed in and the music you’d like played to you, to the way you’d take your tea and toast in the morning. This exquisite level of detail is somewhat cathartic, offering a sense of familiarity and control over a time when neither would be possible without prior planning. It’s comforting to know that your voice will still be heard, even if you cannot speak.
“Please accept my heartfelt thanks for being there, for supplying such a wonderful concept in my time of abject sorrow. In a funny way, this has helped me, so truly, I am grateful. I was involved in a fatal accident which killed my partner and I am left with lifelong injuries. I am totally alone now.
But now, slowly, I can put in place all the things I need and want, when I am older, more unwell. It gives me direction, strength (in a strange way), release because I have nobody to tell these things to.
It’s a wonderful idea, freedom to put in place what you wish for whilst you can take your time to think, consider. This is hugely valuable. Again, thank you.” — Amber user
As a service that’s been created for users, with users, Amber is designed to be accessible to every person — the oldest user is 94, the youngest just 18. And now the team wants to open it up to even more people, by developing a voice interface that can work with smart devices like Google Home. So as well as relying on your household gadgets to remind you when dinner is ready, your device can guide you through a conversation you may find too difficult to have in person.
“We also want to expand the service to make it more holistic,” explains Chris. “When people start going through the process they also begin to think about other things such as funeral arrangements and finances. We want the service to cover these important aspects, too.”
“A great idea which every adult should do whatever their age. Working in healthcare and having had this difficult question asked in my Mum and Dad’s hour of need, I realise how important it is to have you wishes down in writing way before you need them. I would hope my family would do the right thing but instead of forcing them to make difficult decisions when they are already vulnerable I now have my wishes known taking their stress away a little.” — Anne, Amber user
You’re also tasked with considering how you want to be cared for in the event that you can no longer make decisions for yourself, from the clothes you’d like to be dressed in and the music you’d like played to you, to the way you’d take your tea and toast in the morning. This exquisite level of detail is somewhat cathartic, offering a sense of familiarity and control over a time when neither would be possible without prior planning. It’s comforting to know that your voice will still be heard, even if you cannot speak.
Through this ongoing work, Helix and Digital Care Planning hope to bring forward a time when talking about dying is as normal and comfortable as talking about living; when a patient’s loved ones are no longer forced to make difficult decisions about care without knowing what they truly wanted; when the decision to choose peace over pain is respected.
If this article has prompted you to begin thinking about care planning, you can access Amber Plans online at any time, for free.
