Designing at the End
What death can teach us as designers
The experience of dying is a deeply human one. It is a uniquely emotional, psychological, spiritual - even mystical - time that everyone will go through. Death can be a terrifying prospect, but good end-of-life care can make a huge amount of difference. As a discipline, end-of-life care helps people to live as well as possible, all the way to the end. Whereas other forms of medicine try and cure and solve the problem, end-of-life care accepts the death will eventually happen, but that there is a lot that can be done to make someone comfortable, pain-free and perhaps even accepting of their fate.
I design new end-of-life care products, services and experiences as a designer. I co-founded a digital healthcare start-up that is focused on creating digital care plans that empower people to plan their life and death. I created an musical therapy tool that supports young people who have lost a loved one. An app that lets you express complex emotions through music. I work with dying patients, palliative care specialists and families to develop better ways of dying.
In my experience as a designer, I’ve come to understand the value of admitting the presence of death and the end in my design practice. I believe that as an industry, we do not design for the end of things: tech start-ups are defined by user growth and acquisition; designers perfectly hone the onboarding experience for products and services, but pay little attention to off-boarding when a user is finished with them. We need to look at death head-on, and face our fears. I believe that end-of-life care has some important lessons that we can incorporate into wider design practices.
In my talk, I will set the scene for a culture where death has been excluded, but will offer glimpses of a more ‘death-positive’ philosophy, where death and dying can be accepted; detail with case studies from my work with dying people, and in doing so, show how designing for the end in fact can make us more human, more compassionate and better designers for the human experience.
I am a designer, developing new ways of thinking about and experiencing death and dying in the 21st century.
I lead the end-of-life care projects at the Helix Centre, an innovation design lab inside the Institute for Global Health Innovation led by Lord Ara Darzi at St Mary’s Hospital in London. As director of the tech-for-good company Humane Engineering, I co-lead the development of Cove, a flagship mental health app available on the National Health Service (NHS) in the UK, and quoted as “one of the best mental health apps” by the Guardian newspaper. In 2018, I was named a New Radical by innovation foundation Nesta for “pioneering a human-centric approach to the experience of dying, bereavement and grief”.