In March this year, a group gathered together for a symposium in rural Cambridgeshire. The location was the University of Cambridge’s Tudor outpost Madingley Hall.
If the setting were privileged, the topic at hand was universal: the attendees were there to discuss death. Or rather, the process of dying.
Marie Curie’s End of Life Care Design Programme had convened the group, which included doctors, designers and, in their capacity as ‘experts by experience’, two relatives of recently deceased cancer-sufferers.
People whose family members have just died are, in the jargon of the end-of-life industry, known as ‘service users’, who can offer valuable feedback about palliative care.
Mat Hunter, Chief Design Officer at the Design Council, spoke to the audience about how design can improve end-of-life support. In the last few weeks of people’s lives, who wants a house full of industrial machinery, clumsy handrails and wires everywhere?
After his talk, the two ‘service users’ approached him to say they couldn’t agree more. But they also said something that struck Hunter as both unexpected and very powerful:
“We didn’t get the death we wanted.”
Death as an opportunity for design
Increased longevity paired with ageing baby boomers means that our older population is growing at record speed — a phenomenon in developed countries from the UK to Japan. According to Professor David Clark, a researcher in end-of-life care at the University of Glasgow: “We’re seeing what we regard as a massive global issue. There’s a huge wave of dying, death and bereavement.” At the moment about one million people die each week around the world; within 40 years, that number is expected to double.
Compounding the impact of this wave of death is the fact that, for many, the rituals, artefacts and meaning once found in religion no longer provide emotional solace. In the most recent UK census from 2011, the proportion of the population who reported they have no religion reached a quarter — growing to 25.1 per cent from 14.8 per cent a decade ago. A rising trend of agnosticism, atheism and non-affiliation with religion has also been surveyed in countries including France and the US.
Dissatisfaction with legacy service providers and striking shifts in demographics have converged to make alternative ways of dealing with death — that universal experience — in demand. Today’s broadly secular society, especially one in which more of us will soon be dying than ever before, has to find contemporary strategies for death.
A new generation of designers are responding to this call, with novel and challenging ways of thinking. When well-designed technology can help improve our every living moment, why should it desert us in death?
“In theory, design could — and should — have a useful part to play in improving the quality of any aspect of daily life that is no longer fit for purpose, and death is no exception.”
Alice Rawsthorn, design critic
Hearing ‘designer’ and ‘death’ in the same sentence might conjure images of medical accessories, high-tech nursing homes or even ostentatious coffins. For Rawsthorn, however, there’s potential for much richer engagement: “Analysing the strengths and weaknesses of present systems and rituals with an open mind, and applying grace, foresight, rigour, sensitivity and imagination to envisaging better outcomes could help us to die more humanely.”
Design helps people make meaning
Professor Roberto Verganti, in his book Design-Driven Innovation: Changing the Rules of Competition by Radically Innovating What Things Mean, describes how designers can reframe ordinary objects and experiences to create new meaning. Whole Foods Market, for example, reshaped healthy eating “from a severe, self-denying choice to a hedonic one, and shopping from a chore to a reinvigorating experience”; while Nintendo Wii transformed video gaming from passive immersion in a virtual world into active physical entertainment in the real world.
In the same vein, designers can help not just with the technical problems raised by end-of-life care, but also with creating meaning to guide us through that time.
Nick Jehlen is a designer and partner in The Action Mill, a design agency that helps people prepare for their own deaths as well as their loved ones’. His portfolio of work includes a card game that prompts participants to describe how they want to die.
“Almost every game starts with nervous laughter, but in a few minutes it becomes real laughter, and sometimes tears, and some really unexpected conversations come out of it,” says Jehlen. Each month the agency holds a public game event near its office in Philadelphia; he says that participants “wind up feeling deeply connected to the people they play with”.
“I think designers have a responsibility to help people make meaning,” says Jehlen.
“That’s what great designers do, and with death you’ve got a topic that for most people is unfamiliar and taboo and laced with a lot of fear. If we can be humble, designers can help people find the joy beyond that fear.”
Jehlen is part of a growing band of designers who are responding to the challenges of how to negotiate death. Their output ranges from practical items — a scent-releasing device that reminds people with Alzheimer’s to eat, or a digital service that eases mourners’ administrative tasks — to more abstract ones, like a music app for grieving adolescents or Jehlen’s card game.
Individual designers and small-scale designer-led start-ups such as The Action Mill are joined by major corporations like Microsoft, healthcare providers and venture capital-backed enterprises — all taking on the challenge from their own angle to redefine how an ageing population will experience death and dying in the twenty-first century.
Death designs on a grassroots level
In 2013 online design magazine Designboom organised an international competition called Design for Death. Creatives were challenged to reimagine the deathcare industry by developing “products and experiences that create new meaning, interactions and conversations about death”. Pierre Rivière and Enzo Pascual’s submission, Emergence, proposed a highly biodegradable coffin or urn that, as it rots, would enrich the soil and transform the deceased into a living tree. It won a €25,000 first prize. Another winning project also envisaged the dead as continuing to participate in life via nature: Harry Trimble and Patrick Stevenson-Keating’s I Wish to be Rain would send cremated remains into the troposphere, where the capsule holding them would burst, transforming the ashes into raindrops.
Development funding can also be found through other routes. The team behind Tikker, for example, received $98,665 USD from 2,162 backers to launch their project. A reminder to live life to its fullest, Tikker (founded by Fredrik Colting) is a watch that counts down how many seconds you have left on earth, according to a death date that it helps you estimate.
Jehlen explains how his studio entered the death and dying space: “About three years ago we were interviewing a group of hospice nurses, and we kept hearing something interesting: that these nurses could tell the difference right away between families that had talked about death before they faced a crisis and those that hadn’t. And they told us they could provide better care for those families that had had these conversations.”
Jehlen points to a growing consensus that conversations about death are the key factor in improving healthcare at the end of life. In fact, Penn State Hershey Medical Center researchers, led by Dr Lauren Van Scoy (also an advisor to The Action Mill), are currently studying the effects of playing Jehlen’s card game on pre-death planning.
Today, The Action Mill offers a full platform of services to help healthcare organisations improve conversations about end-of-life issues. “We call it Common Practice because we believe that getting good at these conversations is a skill that requires practice, and we think we’re headed toward these conversations being the norm rather than the exception,” says Jehlen.
Indeed, Modern Loss, a website founded by two journalists in 2013 to promote conversations around death and grieving, has been covered in the New York Times and Slate; while death cafés — discussion groups exploring death and end of life over tea — launched in 2011 in London and now number more than 1,400 in 26 countries across the globe.
Health providers collaborating
Our culture’s growing dissatisfaction with the ‘medical model’ for end-of-life care was underscored by surgeon Atul Gawande’s 2014 Reith lecture series for the BBC, The Future of Medicine, in which he encouraged looking at death again.
“We’ve had a 50-year experiment with medicalising mortality, with casting it as just another problem for us to treat like any other, and I think that experiment is failing.”
Atul Gawande, surgeon
“But we have an alternative emerging. It’s one where we learn and elicit what matters most to people in their lives besides just surviving, and then we use our capabilities not to sacrifice it but to protect it. And I think that is our opportunity.”
Human-centred design can ameliorate the process that the dying and their loved ones go through, says Design Council’s Mat Hunter. “The problem with adult social care is that we need joy and we need delight. We need to recognise that life is about living,” says Hunter. One design for end of life with this sentiment at its core is Ode, a small device that sits on kitchen worktops. At mealtimes it emits a variety of food fragrances — from pink grapefruit to coconut curry — stimulating appetite in dementia sufferers and helping them maintain their weight. Ode came out of Design Council’s Living Well with Dementia design challenge, organised in partnership with the Department of Health. Four other products and services that help those affected by dementia to live well in their homes and to improve their overall quality of life were launched as a result of the challenge.
Getting involved in spaces for old age and palliative care is particularly important for designers. “Our merciless need to keep people alive and in hospitals means that people are living out their lives in more medicalised situations, rather than at home,” says Jamer Hunt, Director of the MFA Transdisciplinary Design programme at Parsons School of Design and co-curator of MoMA’s Design and Violence project. “Hospice care at home leads both to longer lives and better lives, so reframing end of life as a ‘home’ process would alone make for dramatic changes.”
Palliative care also would benefit from considered design thinking on a basic aesthetic level, says Hunter, harkening back to those clumsy handrails and wires. Here the designer’s role is to think through these processes and work out ways of “making it feel less and less awful. Because people aren’t working in a way that’s been consciously and empathically designed, there are many unintentional bad moments that add to the difficulty of the situation.”
Digital corporations dealing with death
Intimations of mortality have reached major corporations like Google, Facebook and Microsoft, which are catching up with the fact that their users, whose intimate secrets and social lives they now participate in, don’t live forever.
Richard Banks is Principal Design Manager at Microsoft Research and author of the book The Future of Looking Back. Some of his work explores the ways in which user experience designers can facilitate a smooth digital end-of-life experience, and how future generations may be able to access the digital memories captured in our photographs, tweets and myriad bits and bytes of mementos.
In a research paper for Microsoft entitled Matters of Life and Death: Locating the End of Life in Lifespan-Oriented HCI Research, Banks along with co-authors Michael Massimi, William Odom and David Kirk set out the belief that UX designers can help with meaning-making: “All people seek to achieve personal understandings of what life and death mean. Interactive technologies and systems can place viewers or users into immersive emergent situations and experiences that can open the space for this kind of meaning-making to unfold. For example, systems that sensitively ‘reanimate’ the dead or transcend the barriers of death may have powerful emotional and even therapeutic effects.”
The authors tackle how to mitigate inadvertent digital discomfort after someone dies by removing uncanny elements, such as receiving spam emails from the now deceased or finding disturbing system-generated recommendations to “reconnect” with dead friends on Facebook.
The paper also urges user experience designers to imagine the death of a user: “Systems intended for personal use rarely consider the death of the user, or even a change in the user’s power of agency.” It recommends developing systems that “deliver messages for loved ones into the future” and that give “the dying the chance to say goodbye in a unique or meaningful way through channels that are more accessible than writing or typing”.
Of course, large corporations aren’t the only ones to have thought of these digital opportunities. The app Incubate, founded by entrepreneur Michael McCluney, allows the transmission of time-delayed messages, meaning that you can send messages to your network long after you’ve died. In the same vein, industrial designer Corina Tan’s project The Last of Me allows you to prepare messages that will be sent to selected loved ones upon your death.
Venture capitalists as death disbelievers
“There’s what I call ‘death-ist’ philosophy of people who celebrate death,” Ray Kurzweil, co-founder of the Singularity University and author of the book Transcend: Nine Steps To Living Well Forever, recently told the Financial Times. “We’ve learnt to accept it, the cycle of life and all that, but humans have an opportunity to transcend beyond natural limitations.”
Craig Ventner, Peter Diamandis and Robert Hariri would seem to agree. In 2014 they announced the formation of Human Longevity, Inc., a company focused on extending and enhancing humans’ “healthy, high-performance lifespan”. The three founders (also all scientists themselves) are only the latest in a group of successful Silicon Valley businesspeople taking on projects that challenge death and ageing. In 2013 Arthur Levinson, PhD, in partnership with Google launched Calico (short for California Life Company), which focuses on devising “interventions that enable people to lead longer and healthier lives”. In 2014, physician/hedge fund manager Joon Yun created the Palo Alto Longevity Prize, a $1 million prize challenging scientists to “hack the code of life and cure aging”.
As designers, technologists and the market obtrude deeper into the intersection of human life and death, the uneasy prospect of a two-tier deathcare system looms large. According to Professor David Clark from the University of Glasgow, most of the growth in the morbidity rate will come in the lower- and middle-income brackets. “The mantra of choice is one that the NHS has adopted,” says Clark, “but it may be difficult to deliver in death.” The impact of death and dying as a consumer choice, with people seeking to control their own deaths, needs to be explored. “One of the dangers is that you get a ‘Rolls-Royce’ set of options, and another set of options [at a lower price] and you get the prospect of ‘disadvantaged dying.’”
The polarisation of the death experience between the haves and the have-nots is a potentially contentious and controversial issue that surfaces again in a far-reaching conversation between historian Noah Harari and Nobel Prize-winning economist Daniel Kahneman.
Ageing and death are “technical problems, and in essence, they should have some technical solution”, says Harari. “This way of thinking is now becoming very dominant in scientific circles, and also among the ultra-rich who have come to understand that, wait a minute, something is happening here. For the first time in history, if I’m rich enough, maybe I don’t have to die. Death is optional.” As Harari points out, this removes the age-old great equaliser between rich and poor — that everyone gets old and dies.
A process, not an event
Not everyone is convinced by this talk of transcending the limits of the human condition — but where some might cast this scepticism as defeatist, for many knowing the limits of technology is liberating. Part of life’s fragility, and beauty, is bound up in not knowing when it will end.
In one of his Reith lectures, surgeon Atul Gawande says: “We have a problem of hubris, overweening confidence, but we slowly come to realise that we can’t fix what can’t be fixed. We have no greater un-fixables than ageing and death themselves.” The techno-utopians might say otherwise, but ultimately, there are certain problems that cannot be ‘designed out’.
Once we recognise what can’t be fixed, then we will be able to have a richer dialogue: one centred around death as a transition, says Jamer Hunt from Parsons. “The biggest challenge is in reframing death as part of life, not as the end of life,” says Hunt. When dying is viewed as a continuum rather than an event, we will have more humane pre- and post-death experiences.
Renegotiating how we deal with death needs to be done with care, says Hunt, who is already writing his own death plan. “The demand for a more ‘meaningful’ death may take us down some dark alleys and dead ends before we figure out how to do this better. The occasional superficiality of the baby boom generation combined with the look-at-me sensibility of the millennial generation also means that the injection of experience design into the death process could lead to some gruesome outcomes.”
“Turning death into an emotional spectacle is not what we need.”
Jamer Hunt, Director of MFA Transdisciplinary Design programme, Parsons
An anthropologist by training, Hunt is also mindful of the possible ethical bear traps along the way. “There are lots of risks with design jumping into the fray when it comes to end of life,” he says. “Crassly commercialising or commodifying death will only alienate, put people off and make them resent having the fingerprints of a designer on the experience.”
Critic Alice Rawsthorn agrees that designers’ involvement in helping negotiate death needs to be treated sensitively: “Death is one of those areas where the interests of government, religion, the law, capitalism and free will all converge, making it an unusually complex field in which to intervene.”
Despite its complexity, the process of dying is an issue that — with the clock ticking for our ageing population — urgently needs design intervention. Of course, design won’t provide all of the answers. As Hunt says: “Designers tend to think in terms of massive, impactful change, and this may be a realm where incrementalism is more important than transformation. It is especially important for designers to listen first, and not just approach it like the hero looking to make change for change’s sake.”
Designers should tread carefully, with humility, but not without purpose:
“Designing for the end of life is not something venal or style-driven. It is a deeply human need to wrestle with a profound moment in our social relationships.”
Other articles in The Design Economy series:
- A Design Economy Primer: How design is revolutionising health, business, cities and government
- The Secrets of the Chief Design Officer: How to do the job that Steve Jobs did
- Can Obama Reduce the ‘Empathy Deficit’?
- Can Designers Fix Our Ailing Democracy?
- The Ethics of Digital Design
- Is This the Bank of the Future?
- It’s education, stupid. Or, how the UK risks losing its global creative advantage
- Policy v5.127: Could government make services like Dyson makes vacuum cleaners?
- Will the Internet of Things set family life back 100 years?
For more information, please contact:
Greg Eden, Digital Communications Manager Greg.Eden@designcouncil.org.uk