Designing for Death: Bettering End-of-Life Experiences

As the end-of-life experience becomes increasingly medicalised and sanitised, Veronica Simpson looks at how designers, architects and community networks are sparking a gentle re-engagement.

Earlier this year, I found myself waiting, somewhat nervously, in the Menier Gallery in Bermondsey for my friend Louise to join me at an evening of encounter with total strangers, on the topic of death. I am here to experience my first Death Café. Morbid as this sounds, it proves to be a strangely uplifting experience.

The dozen scattered tables for four or five people soon fill up, and a buzz of conversation begins, launched by our ‘host’ Dr Laura-Jane Smith. It’s a totally free-range discussion, she says. There is no agenda; anyone can talk about anything.

And there is no formula – apart from one thing: there must be tea, rather than alcohol (so as not to risk emotional overload) and cake (in order to ‘ground us pleasurably in the here and now’). We’ll have a break after 45 minutes and then the tables can change/shift personnel – or not. At my table of four, Louise is here to explore how she might help her elderly parents prepare for her 80-something father’s imminent death – he is in an advanced stage of terminal cancer, but the ‘D’ word has not been mentioned yet within her family group.

Also on our table is Angela, whose childhood – and then lifelong – terror of death was finally, abruptly, faced when her older brother died suddenly in his mid-40s. And her friend Theresa is there, who lost her sister in her 20s.

She has been a great source of solace to Angela – because nobody else she knew was interested in exploring the topic – and has ongoing concerns of her own: she is worried about the size and shape of this ‘eternal afterlife’ that her Christian faith has given her to believe occurs after death. I’m there because I’m curious, and because I’ve witnessed how grief and bereavement can completely derail even the most seemingly sane individuals, mainly through the abject fear of confronting their own inevitable end.

Death-themed crockery cand be found in use at the Death Cafés, including this skull decorated coffee cup, for the tea and cake that’s servedDeath-themed crockery cand be found in use at the Death Cafés, including this skull decorated coffee cup, for the tea and cake that’s served

We don’t ‘do’ death any more. The experience of death has been franchised out to medics, mortuaries and funeral directors, to the point where most people may not even encounter a dead body until they are in their late-middle age and experience the death of a parent.

Even then, it’s likely to have been sanitised and medicalised for them: at a time when nearly 80 per cent of people in the USA (and probably in the UK) now die either in hospital or a hospice, our personal contact with the grim reaper is restricted to hospitals, mortuaries and funeral homes. We no longer wash and tend to our deceased, honouring them at the heart of their households with days of family and community commemoration and commiseration. No wonder it’s a subject of fear and – driven by our youth-obsessed consumer culture – obsession or loathing; either glorified or ‘gore’-ified in violent video games and vampire or zombie movies, or ‘banished’ magically thanks to the fear-mongering rhetoric of an ever-growing assortment of youth-preserving potions and surgical techniques.

The fallout from this silence around the ‘D’ word is, inevitably, increased anxiety. And anxiety – for the design community – brings opportunity. Back in 2013, I reported on emerging ideas with which the design and architecture community were facilitating or supporting new ways of engaging with death for a secular society, from designer coffins to multipurpose, multi-faith memorial chapels.

Then, it seemed the core issue was the absence of religion and ritual to add meaning to the mourning. Now, a few years down the line, it seems the focus, for designers as well as well meaning social entrepreneurs, has evolved another stage, to address the complete absence of conversation or encounter.

Hence the rise of the Death Café, a secular programme begun to provoke conversations around death for anyone who has either had a recent bereavement to deal with (and nobody to talk to about it), or just people who are concerned, worried or interested. Death Café was launched in London in 2011 and has subsequently inspired more than 1,400 events in 26 countries (see case study).

Urban Hospice in Copenhagen

How we confront and resolve our fears around death is already a massive global issue, due to increased longevity, according to Professor David Clark, a researcher at the University of Glasgow into end-of-life care.

He says there is a ‘wave of dying, death and bereavement’, with about a million people dying each week; within 40 years that number will apparently double. American surgeon and author Atul Gawande (a leading surgeon, writer and author of the bestselling book Being Mortal) spelled out how death and dealing with it has become a huge problem for the medical profession in his 2014 Reith Lectures for the BBC, entitled the Future of Medicine. His third talk, the Problem of Hubris, elaborated on the fact that he and his fellow doctors ‘come to med school to be heroes. We learn what goes wrong with the body, and how to fix it. We have a problem with hubris – overweening confidence – but we slowly come to realise we can’t fix what can’t be fixed’.

During years of practice, he realised there was a major hole in his education – dealing with the many patients who ‘were seeing me for problems that weren’t going to get better’. Learning how to have those difficult conversations has been, for him (and presumably those he treats), life-changing.

Gently helping his patients confront the realities of only having a few weeks or months left to live can make a huge difference to those last weeks or months, he says. And he cites a study of cancer patients over their final months, immediately after major surgery.

Architecture practice Nord has blended rectilinear and curved elements for rhythm and form for Urban Hospice in CopenhagenArchitecture practice Nord has blended rectilinear and curved elements for rhythm and form for Urban Hospice in Copenhagen

‘Less than a third [of them] had had a conversation with their physician about their priorities and goals for their end of life. And that group did far better, had less suffering, were more likely to get the care they wanted, less likely to die in the hospital or ICU, more likely to die at home or with their family.’

These conversations not only benefited the patients but also helped their families. Says Gawande: ‘Interestingly, six months after their death, members of their family were less likely to be depressed or have post-traumatic stress-type symptoms. When you ask people about their priorities, it has a special power.’ Instead of sitting back while the doctor/medic fires a number of increasingly ‘bleak’ medical options at them, the medic is encouraged to listen. Says Gawande: ‘The way people come to terms with things is by putting it into their own words.’

The key questions, he discovered, were as follows: ‘What is your understanding of where you are with your condition at this time? What are your fears and hopes for the future? What are your goals? What outcomes would be unacceptable to you?’ In this way, he says: ‘They have told you about the priorities they care about. That tells you what lines you do not cross and what you might be aiming for.’

Järva Burial Ground

But it is starting those conversations that is the problem, and Nick Jehlens – a designer interested in promoting positive social change through design – has come up with a way of making that process seem more like fun.

About four years ago, he and his design partner launched Common Practice, a company to support a really successful product that they designed in response to a California Healthcare foundation competition to develop a tool that would help people talk about death.

Called My Gift of Grace, it has – perhaps ironically – taken on a life of its own. Jehlens says: ‘It’s fairly simple, and fun to play, with rules and encouragements. Like any other game, it has a winner and a scoring system.

The questions are designed to be very open-ended. And there are “Thank you” chips, like bingo chips, that players give to each other to express appreciation for things they have said or done. It’s a deceptively simple idea, but when you start playing, the way people use these chips reveals the value and meaning of the underlying conversations.’

Questions are not all gloomy. They may be along the lines of: ‘What activities make you lose track of time?’ This highlights both the respondent’s state of mind and the things they love to do. However, one of the most conversationally rich is: ‘Who haven’t you talked with in the past six months whom you’d want to talk with before you died?’ Having a whole range of players, from patients to carers to family members makes it far more satisfying, says Jehlens. ‘Everyone in the game gives their own answer and compares theirs with other people’s. Having people participate in an equal way means that you normalise the conversation, so you stop turning the person facing a serious illness into “another kind” of person.’

What started out as a prototype game that triggered a monthly conversational event has become a commercial game that anyone can play, which has sold many thousands of copies within the USA, and also Singapore and Mexico. It has been translated into Thai and a Czech version is under way. It is slowly making inroads into the UK, where Jehlens sees many synergies between their approach and the Death Café. ‘The Death Café is more open-ended. Death cafes have become really popular in the USA. All the members of our team have participated in one and they’re a great approach. But there need to be different ways of approaching this conversation.

Hospice Within A Hospital

There is no one-size fits all.’ Where the game has made particular headway is via community groups and libraries, as well as healthcare organisations doing outreach with their wider communities. Says Jehlens: ‘They will hold an event, like any other kind of community event. They will put out posters. The thing we have found most effective is getting folks who have come to past events giving testimonials, either in posters or videos. Before you come to an event like this, it seems very strange. But there’s a moment where you hear everyone in the room get excited about the game.’

It has turned out to be not a one-off experience for many, says Jehlens: ‘We encourage people to play the game over and over. I’ve played the game probably hundreds of times by now. My answers change almost every time I play. One of the interesting things about these conversations is the more you have them, the more you get to know yourself, the more you understand how the people around you are thinking, and their answers contribute to your answers.’

There are positive repercussions from playing this game that Jehlens hadn’t necessarily anticipated: ‘It turns out people who play the game often end up taking actions and making decisions that everyone in the healthcare industry says you should do. We’re working with a researcher from Penn State University, who is looking into what people do after they play the game. She’s measuring players for the quality of conversations, and the topics coming up. She conducts a phone survey after six to eight weeks. Of people who have played the game, 78 per cent have taken decisions that came out of playing the game, such as looking at an assisted living home, or planning their own funeral. ‘That’s not what we designed the game for; we designed the game to spark a conversation. We’re setting up a good conversation and trusting that they will take whatever steps they need to take.’

Since last January Jehlens and his Common Ground team have been working on ways to insert parts of the game into healthcare interactions. One group of cardiac nurses at a Delaware hospice has tried using a different card every day to promote conversations with their patients. The patient’s response is written up and posted outside their door for other medical staff to see. ‘That way,’ says Jehlens, ‘every person who walks into that room can start a conversation that is not about medicine, but about the person themselves.’

Atul Gawande concludes that there is much to be learnt from hospice nursing – these nurses are there to use all their medical and humanitarian instincts to help patients live the best they can for that day. He says: ‘Often people who go into hospices live longer than those who stay in hospital. It’s almost Zen…We have [a model emerging] where we learn what matters to people in the final months of their lives, and to protect those priorities. That is our opportunity.’

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