More than meets the eye: How design can help people at the end of life
Ivor Williams explains the background to his longer article published in the May/June issue of the European Journal of Palliative Care.
Design might not seem like an obvious ally to end-of-life care. Isn’t money better spent on therapists, palliative care nurses, and out-of-hours care services rather than making things look good? You could be right in thinking that, if design was only about aesthetics.
Thankfully, designers can play a far more useful role than simply being craftsmen or creators of beauty. In his 1971 book, the designer Victor Papanek defined a new focus for design saying: “the only important thing about design is how it relates to people”. His pioneering work in ‘social design’ has led me, as a designer, to work to support people at the end of their life, focusing around their needs, their relationships and their hopes and goals.
I lead the end-of-life care projects at the Helix Centre, an innovation lab in the heart of health care. Situated in St Mary’s Hospital in London, the Helix Centre is a collaboration between Imperial College London and the Royal College of Art. Our mission is to achieve high quality care for all, worldwide and with the largest impact possible. It exists to drive progress and keep moving forward. We are an interdisciplinary group of designers, technologists, clinicians and researchers. We use human-centred design to dissect problems, identify opportunities, and develop clinically evaluated digital solutions.
Our dedicated team works on several end-of-life care projects. We aim to research and design innovative solutions that improve the quality of life for people — young and old — living with life-limiting conditions or who are at the end of their life. We are committed to alleviating suffering for dying people, empowering them to live their life to the fullest and to transform and improve the experience of families and carers, as well as healthcare professionals. We have been developing three active areas of work that broadly address end-of-life care in the hospital, the home and the hospice.
So far, we’ve focused on re-designing the experience of capturing emergency care decisions at the end of life with the ReSPECT plan and process. At the centre of the ReSPECT process is a paper form which is designed to guide a conversation between healthcare professionals and the patient. We know this is important because talking about death in a hospital can be incredibly difficult. The curative setting builds an expectation with patients that they are going to get better, receiving life-prolonging treatment at all costs. Many feel that the responsibility for discussions around palliative or end-of-life treatments should come from clinicians.
The ReSPECT form features a graphic device used to demonstrate that there is often a compromise between sustaining life and providing comfort and dignity. We helped to clarify this process for patients, to make it accessible and easy to understand. Although seemingly antiquated in the age of digital apps, the paper form and process enable an important change in health care: to bring the relationship between patient and doctor to the forefront, and support meaningful patient-centred care.
We’re creating the most comprehensive patient-facing advance care planning platform that allows everyone to easily capture their end-of-life care decisions, with a product called Amber Care Plans. Advance Care Plans enable people to make decisions about their future care, ranging from their preferences for personal hygiene to advance decisions to refuse treatment. They’re known to effectively reduce hospital bed days in over-65s, and move deaths from hospital to the community. However their uptake is very poor, with poor coordination between services and issues of versioning when different plans exist in different places. Our digital plan — Amber — changes that, to make advance care plans easy to complete and share.
Lastly, we’re also working with leading hospice partners to create the future of adult and children’s hospice care in the UK and abroad. We believe that design has a huge role to play in transforming end-of-life care for decades to come and, if approached the right way, we think that everyone stands to benefit.
Read the full article in the European Journal of Palliative Care free of charge
This post relates to the longer article, Using human-centred design in end-of-life care by Ivor Williams is published in the June edition of the European Journal of Palliative Care (EJPC) 2018; 25 (3). To download the full article free of charge please login if you already have a subscription, or register here.
