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The end is the beginning

A reflection on four years of designing end-of-life care, and where we go from here

A modern death is a complex experience

We live in a time of long age. Never before have so many people lived for so long. However there is a downside.

Most of us will have a long, slow decline towards the end of our lives with diseases such as dementia. Although we are living longer, more of us are living in care homes with these long-term chronic diseases.

Survival rates from many types of cancer are increasing, yet the majority of us will live with years of uncertainty around our mortality, which can deeply impact our health and wellbeing.

The fact is that most of us still die in a hospital, where end-of-life care can be inconsistent. However, the clinical culture around death and dying is slowly and steadily changing. More doctors and nurses are comfortable talking about death and are able to provide better end-of-life care for patients and families.

End-of-life care is a specialist service with limited numbers of staff. To better serve patients, generalists in healthcare and laypeople — such as care home staff — need to become better at managing the dying experience, leaving the more complex cases to end-of-life care specialists.

…families are expected to do more — or want to do more — but often don’t know how.

As the population ages, more families are caring for loved ones and for longer. Health services and hospices provide good community care, but families are expected to do more — or want to do more — but often don’t know how.

Designing for end-of-life care

At the Helix Centre, we’ve used design to identify the human needs at the heart of many of these problems. We’ve developed and launched tangible solutions that support people in their closing stages of life, at home and in hospital.

Over the past four years we’ve developed or supported new ways to deliver better end-of-life care such as the emergency care planning initiative ReSPECT or our advance care planning platform, Amber.

From this work, we’ve learned some important things.

Firstly, the dying process is a holistic one. It is a uniquely emotional, psychological and often spiritual period of life, which everyone will experience. In order to support the holistic needs of dying people, it is important that services and products are purposefully designed support these spiritual, emotional and psychological (together, often referred to as psychosocial) needs. Yet we often neglect more nuanced psychosocial elements of care, such as emotional or psychological support and companionship, which enable us to live well until we die, all too often waiting until people are at breaking point.The work by Professor Scott Murray at the University of Edinburgh really outlines the importance of this.

Beyond the medication regimes, form-filling, consultation conversations and visits, there is everyday life.

Secondly, death should be a predominantly social, rather than clinical, experience. Death can be a terrifying prospect, but we know that high quality, timely end-of-life care makes a huge difference. Clinical care can be delivered to a high quality by specialist healthcare professionals, but there is a role for others as well. Beyond the medication regimes, form-filling, consultation conversations and visits, there is everyday life. We strongly believe that those people surrounding a dying person in their everyday life — be it friends, family or wider community — can deliver incredible care if supported in the right way, because good end-of-life care is everyone’s business. Initiatives such as Compassionate Neighbours and Coach4Care reflect this type of approach.

Thirdly, as a group of designers, clinicians, technologists and researchers working in this area, we feel we have come up against the limits of some of our methodologies. Human-centred design and patient-centred care place an essential focus on the individual — the patient, professional or other person — that it is trying to solve problems for. This practice has enabled service provision and technology to be built around the actual people who use them, enabling more compassionate care and creating effective user experiences.

If we are to provide genuinely holistic care for people, we need to actively acknowledge these wider systems and design within them.

However, we increasingly believe this laser-focus can be detrimental to the wider context of subtle interactions, interconnected relationships and ecosystems that these individuals sit within. If we are to provide genuinely holistic care for people, we need to actively acknowledge these wider systems and design within them. Similar ideas have been identified by others in the wider field such as Hillary Cottam, Cassie Robinson and Dan Hill.

Towards a more holistic, systemic care

We’ve absorbed these lessons into our latest work, and in a set of upcoming articles we will share our recent findings, prototypes and headline conclusions as to where we believe we should be focused going forward.

Our first article is about our recent research and prototyping work to provide better psychosocial care for patients living with a life-limiting illness and professionals experiencing burnout, through mindfulness for palliative care.

The second article reveals the research we have done to understand how to normalise and make equitable some important clinical end-of-life care at home, delivered by supporting laycarers that utilises both policy and design, in the use of injectable medications.

We are publishing these articles so that we can receive critical feedback from the wider community. We’re interested in diverse views as to whether we’ve identified the right areas to develop, where we can improve and focus our energies and how we might better support and work with the wider community in delivering these projects. We’re looking forward to sharing these ideas with you.

Helix Centre is an innovation lab working at the heart of healthcare. We translate research into products that improve health outcomes. We are part of Imperial College London and the Royal College of Art, and based in St Mary's Hospital, London.

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Ivor Williams

Ivor Williams

Designer, developing new ways of thinking about and experiencing death, dying and loss in the 21st century.

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