Designing systems of care for a modern death

Ivor Williams, Helix Centre, Institute of Global Health Innovation, Imperial College London

Dying in the 21st century is complex, and as we enter the third decade we continue to experience massive shifts in our way of life, not only in politics and economics but in health. The health challenges of the 21st century range from climate and ecological breakdown and its inevitable effects on our individual and collective health; the intensification of a global mental health crisis; the rise of antimicrobial resistance and ageing populations declining over longer periods with neuro-degenerative diseases such as Alzheimer’s. All of this is placing unprecedented strain on our existing models of care. Is the problem, as Madeleine Albright once put it, the fact that “we are taking 21st century challenges, evaluating them with 20th century ideas and responding with 19th century tools?”

The late-20th century idea of managing health, death and dying through personalised care buckles under the weight of necessary interaction with various health and care systems formed from 19th century models of care, such as the charitable community hospice or the disease-focused hospital. These institutions served us well when being in the community meant we would receive much poorer care, or lower our chances of survival when we were ill, but this has changed. As Allan Kellehear has pointed out, people spend only 5% of their time at the end of life with healthcare professionals. With more people dying in care homes, the number is set to double to around 40% in 20 years time. This shift means that home carers will need to deliver nearly 70 hours of care per week in the last three months of life.

In order to meaningfully transform our relationship with death and dying – to make it more human-centred, socially-connected and interconnected –  we need to take a more relational approach to end of life that encompasses the wider, non-medical ecosystems of care. In other words, we need to take a systemic approach to end of life care.

Palliative and end-of-life care, as clinical specialisms, already successfully care for people with a human-centred, holistic system that encompasses not only the physical needs of a person, but their psychological, social and spiritual needs. But this approach needs to be scaled up through the wider groups of people and institutions with whom we all interact, to better support the interrelated needs we all have.

Taking a systems-view implies being able to appreciate these realities, processes and events that are part of being ill and near death. This naturally extends into the experience of the aftermath, as loss and bereavement is threaded with every other part of our daily life. In this way, design can work throughout and across these systems, to leverage both human relationships, as well as health policy and education, to support the vital changes we need.

What designers do

Designers – trained professionals typically engaged in the design of objects – evolved out of the industrial revolution in the 17th century, with the creation of mass-produced goods such as textiles and ceramic patterns, as a profession distinct from a craftsman or artist. It was at the turn of the 20th century, with a focus on products – chairs, lights and kitchenware, for example – that design took its more commonly accepted form. Most people today still hold the belief that designers concentrate their activities exclusively on the creation of objects for mass production. However, since the 1920s, designers have been responsible for the explosion of visual and conceptual identities of corporate and national bodies through advertising and branding (think of airlines or luxury brands); the creation of services and interactions that punctuate our daily routines (such as computer interfaces), and since the early 1990s, have helped create the digital infrastructure that connects our modern life (such as the UK government digital service http://www.gov.uk). 

There are a particular set of skills and perspectives that a designer can bring to a situation. Fundamentally, the designer is someone who asks and frames questions – at times even provocative or transgressive ones – rather than providing concrete answers. The recent exhibition, The Departure Lounge created by the Liminal Space explored the many questions at the heart of a modern death. By designing a unique experience in a shopping centre, the designers started a public conversation about the end of life and how we can support people to have a ‘good death’ in the future. The card game, Hello by Common Practice builds on the essential values of exploration, storytelling and connection around the end-of-life by asking questions that open up the conversations that matter the most. The playful nature of the games bely a complex set of interactions that have been explored through hundreds, if not thousands, of conversations that have been held by designers.

The ability to “hold” space to let things emerge, is another element of a skilled designer, who is comfortable with ambiguity and possesses. They use workshops or creative activities to enable both their own and others’ ideas to flourish through a child-like approach. These approaches can help make the invisible, visible, and expose the structures of power and control that underpin health and care systems. When the Helix Centre co-designed the emergency care process, ReSPECT, we explicitly designed in discussion points between doctor and patient to help expose – and then repair – the power balance wherein doctors could choose to disengage from learning a dying patient’s preference and maintain a more paternalistic approach to their care.

Designers working today are almost always human-centred. It is a practice with its roots in the 1960s when an explicit social focus emerged through designers such as Victor Papanek, who wanted to focus the design industry on serving people’s human needs rather than commercial profits. Designers today put people and their stories at the heart of what they do. They approach topics with an empathetic attitude (essential for health and care), using the insights gathered from being with people to drive their ideas, to help ground projects in lived experiences and desirable futures. Design-led products that take this human-centred, empathetic approach around loss have emerged in the last few years: immersive games that document the last years of a young child or provide support for young people experiencing grief and bereavement. Equally, design is also evidence-based, both in its grounding in research (drawing upon existing literature, utilising ethnographic practices) and using an iterative approach to prototyping (testing hypotheses, validating through user testing). In this latter sense, designers are creators, makers and builders. A designer will make a prototype – a sketch, a model, a testable idea – to convene people together, to facilitate a conversation, to connect with people of diverse backgrounds and find a common ground with which to build on. This process was used to great effect when Innovation Unit created a series of prototypes to ‘mobilise a new vision for ‘better endings’’ in 2017. One of their prototypes, Coach4Care has been integrated into St Christopher’s Hospice in London as a peer-led coaching programme that trains ex-family carers to become coaches for current family carers of people with progressive illnesses. By expliciting designing a service that exists outside the formal clinical relationship of doctor/nurse and the public, new patterns of engagement can occur. 

The contemporary designer is concerned about the thing itself (a digital prescription form, a physical device, an ephemeral patient experience) as much as the way in which it interacts within a wider web of other objects, places and people. Many people cite Jony Ive (previously of Apple) as the most important designer of the 21st century, whose responsibilities ranged from the icons on an iPhone; to the ways in which apps delivered information about location, privacy and data; to the physical iPhone itself; to the interior design of the Apple stores in which the devices were sold. In this way, the work of a contemporary designer extends everywhere. 

This work can be expressed in various ways. From the way spaces are experienced physically, such as The Prince and Princess of Wales Hospice in Glasgow, where the furniture is at once sensual, comforting and hygienic, and where the objects and materials aim to create a cohesive sense of home at scale. It can also be experienced sonically, where sound in more clinical spaces can be re-designed to be less discordant, more harmonious in Yoko Sen’s My Last Sound project.

Designing better end of life care

So how might design support a healthier relationship with dying, death and loss by taking a systemic approach, and where should designers work next?

Design can expose the complex human energies and relationships that exist throughout the various places, organisations, institutions and ecosystems in society, in order to keep people at the centre. When design can help highlight and empower people in these systems – which traditionally focus on abstract values such as ‘bed-day savings’ – it can ensure that what matters most to people is what becomes our success measurements. 

For things to change and improve, it may be necessary for old ways of working – GPs as primary points of care; hospices as charitable, yet essential places in our care system –  to be hospiced themselves, while phasing in new ideas and practices. How might design assist in the creation of new movements, institutions and organisations of the 21st century that really challenge the old ways of living and dying? Systemic re-designs such as the Marie Curie Design to Care programme signal this emerging practice.

In supporting emerging, asset-based, socially-focused and community-driven approaches to care – such as Compassionate Communities – design can help practically build out the tools, practices and opportunities for them to flourish in a life-affirming and positive way. To help aide transitions from old ways of thinking – focused on what is wrong – into new ways – working with what is strong – design can provide positive, tangible expressions of sometimes intangible ideas.

Design practices can help recognise and create space for endings and loss as a natural, social experience. By designing better end-of-life experiences, we can better support the life transitions we all individually and collectively make as we move through our lives. Designing ‘closure experiences’ described by the likes of Andend – the world’s first customer ending business – will be increasingly important as we continue to live our lives digitally. The apps, websites, services and data we use and collect through our lives hold so much of who we are now. How might design help everyone end their digital lives effectively and meaningfully?

All of these recommendations require thoughtful, experimental and iterative exploration that will continue to emerge over the coming years, and design will play an important part.