What constitutes a good death? This is the question posed by a pioneering project set up to redesign the end-of-life experience, based at the Royal Trinity Hospice in Clapham, south London. A group of service designers (bear with me) and design students have spent the past eight months investigating the experience of death and dying in Britain, and how it might be improved.
According to census data from the Office for National Statistics, life expectancy, which was 45 years at the beginning of the 20th century, is expected to be almost double that in 2030. Extended lifespans mean that a growing number of people are facing debilitating diseases in old age and, as a result, more are ending their lives in hospitals and hospices than ever before.
Royal Trinity is the country's oldest hospice and a world leader in palliative care. This year it celebrates its 125th anniversary and, having observed the changing demographics of society first-hand over the course of its history, the hospice continues to strive to innovate and evolve to meet the needs of society. To date, its services have been principally focused on caring for those with a life-limiting illness after they have been diagnosed, but a chance encounter between Dallas Pounds, chief executive of Royal Trinity, and Nick de Leon, head of the service design programme at the Royal College of Art, has resulted in the development of a fascinating new project: to rethink the concept of both living and dying, and encourage users to engage with Trinity's services at an earlier stage in their lives. In doing so, the hospice also hopes to initiate a national conversation about end-of-life experiences and take the subject of death to the British high street.
Sarah Ronald is founder and managing director of Edinburgh-based service design company Nile, which has co-ordinated the project on a pro bono basis since it began, and has supported staff to mentor the RCA design students. "The hospice was keen to set itself apart from others but didn't quite know how to do it," she says. "Together [with the RCA and Royal Trinity], we came up with the idea of redesigning their services and exploring this rich and often forgotten subject of the end-of-life experience."
Health news in pictures
Health news in pictures
1/23 Cycling to work ‘could halve risk of cancer and heart disease’
Commuters who swap their car or bus pass for a bike could cut their risk of developing heart disease and cancer by almost half, new research suggests – but campaigners have warned there is still an “urgent need” to improve road conditions for cyclists. Cycling to work is linked to a lower risk of developing cancer by 45 per cent and cardiovascular disease by 46 per cent, according to a study of a quarter of a million people. Walking to work also brought health benefits, the University of Glasgow researchers found, but not to the same degree as cycling.
2/23 Ketamine helps patients with severe depression ‘when nothing else works’ doctors say
Ketamine helps patients with severe depression ‘when nothing else works’ doctors say
3/23 Playing Tetris in hospital after a traumatic incident could prevent PTSD
Scientists conducted the research on 71 car crash victims as they were waiting for treatment at one hospital’s accident and emergency department. They asked half of the patients to briefly recall the incident and then play the classic computer game, the others were given a written activity to complete. The researchers, from Karolinska Institute in Sweden and the University of Oxford, found that the patients who had played Tetris reported fewer intrusive memories, commonly known as flashbacks, in the week that followed
4/23 Measles outbreak spreads across Europe as parents shun vaccinations, WHO warns
Major measles outbreaks are spreading across Europe despite the availability of a safe, effective vaccine, the World Health Organisation has warned. Anti-vaccine movements are believed to have contributed to low rates of immunisation against the highly contagious disease in countries such as Italy and Romania, which have both seen a recent spike in infections. Zsuzsanna Jakab, the WHO’s regional director for Europe, said it was “of particular concern that measles cases are climbing in Europe” when they had been dropping for years
5/23 Vaping backed as healthier nicotine alternative to cigarettes after latest study
Vaping has been given an emphatic thumbs up by health experts after the first long-term study of its effects in ex-smokers. After six months, people who switched from real to e-cigarettes had far fewer toxins and cancer-causing substances in their bodies than continual smokers, scientists found
6/23 Common method of cooking rice can leave traces of arsenic in food, scientists warn
Millions of people are putting themselves at risk by cooking their rice incorrectly, scientists have warned. Recent experiments show a common method of cooking rice — simply boiling it in a pan until the water has steamed out — can expose those who eat it to traces of the poison arsenic, which contaminates rice while it is growing as a result of industrial toxins and pesticides
7/23 Contraceptive gel that creates ‘reversible vasectomy’ shown to be effective in monkeys
An injectable contraceptive gel that acts as a ‘reversible vasectomy’ is a step closer to being offered to men following successful trials on monkeys. Vasalgel is injected into the vas deferens, the small duct between the testicles and the urethra. It has so far been found to prevent 100 per cent of conceptions
8/23 Shift work and heavy lifting may reduce women’s fertility, study finds
Women who work at night or do irregular shifts may experience a decline in fertility, a new study has found. Shift and night workers had fewer eggs capable of developing into healthy embryos than those who work regular daytime hours, according to researchers at Harvard University
9/23 Breakfast cereals targeted at children contain 'steadily high' sugar levels since 1992 despite producer claims
A major pressure group has issued a fresh warning about perilously high amounts of sugar in breakfast cereals, specifically those designed for children, and has said that levels have barely been cut at all in the last two and a half decades
10/23 Fight against pancreatic cancer takes ‘monumental leap forward’
Scientists have made a “monumental leap forward” in the treatment of pancreatic cancer after discovering using two drugs together dramatically improved patients’ chances of living more than five years after diagnosis.
11/23 Japanese government tells people to stop overworking
The Japanese government has announced measures to limit the amount of overtime employees can do – in an attempt to stop people literally working themselves to death. A fifth of Japan’s workforce are at risk of death by overwork, known as karoshi, as they work more than 80 hours of overtime each month, according to a government survey.
12/23 Over-cooked potatoes and burnt toast ‘could cause cancer’
The Food Standards Agency (FSA) has issued a public warning over the risks of acrylamide - a chemical compound that forms in some foods when they are cooked at high temperatures (above 120C).
13/23 Cervical cancer screening attendance hits 19 year low
Cervical screening tests are a vital method of preventing cancer through the detection and treatment of abnormalities in the cervix, but new research shows that the number of women using this service has dropped to a 19 year low.
14/23 High blood pressure may protect over 80s from dementia
The ConversationIt is well known that high blood pressure is a risk factor for dementia, so the results of a new study from the University of California, Irvine, are quite surprising. The researchers found that people who developed high blood pressure between the ages of 80-89 are less likely to develop Alzheimer’s disease (the most common form of dementia) over the next three years than people of the same age with normal blood pressure.
15/23 Most child antidepressants are ineffective and can lead to suicidal thoughts
The majority of antidepressants are ineffective and may be unsafe, for children and teenager with major depression, experts have warned. In what is the most comprehensive comparison of 14 commonly prescribed antidepressant drugs to date, researchers found that only one brand was more effective at relieving symptoms of depression than a placebo. Another popular drug, venlafaxine, was shown increase the risk users engaging in suicidal thoughts and attempts at suicide
16/23 'Universal cancer vaccine’ breakthrough claimed by experts
Scientists have taken a “very positive step” towards creating a universal vaccine against cancer that makes the body’s immune system attack tumours as if they were a virus, experts have said. Writing in Nature, an international team of researchers described how they had taken pieces of cancer’s genetic RNA code, put them into tiny nanoparticles of fat and then injected the mixture into the bloodstreams of three patients in the advanced stages of the disease. The patients' immune systems responded by producing "killer" T-cells designed to attack cancer. The vaccine was also found to be effective in fighting “aggressively growing” tumours in mice, according to researchers, who were led by Professor Ugur Sahin from Johannes Gutenberg University in Germany
17/23 Green tea could be used to treat brain issues caused by Down’s Syndrome
A compound found in green tea could improve the cognitive abilities of those with Down’s syndrome, a team of scientists has discovered. Researchers found epigallocatechin gallate – which is especially present in green tea but can also be found in white and black teas – combined with cognitive stimulation, improved visual memory and led to more adaptive behaviour. Dr Rafael de la Torre, who led the year-long clinical trial along with Dr Mara Dierrssen, said: “The results suggest that individuals who received treatment with the green tea compound, together with the cognitive stimulation protocol, had better scores in their cognitive capacities”
18/23 Taking antidepressants in pregnancy ‘could double the risk of autism in toddlers’
Taking antidepressants during pregnancy could almost double the risk of a child being diagnosed with autism in the first years of life, a major study of nearly 150,000 pregnancies has suggested. Researchers have found a link between women in the later stages of pregnancy who were prescribed one of the most common types of antidepressant drugs, and autism diagnosed in children under seven years of age
19/23 Warning over Calpol
Parents have been warned that giving children paracetamol-based medicines such as Calpol and Disprol too often could lead to serious health issues later in life. Leading paediatrician and professor of general paediatrics at University College London, Alastair Sutcliffe, said parents were overusing paracetamol to treat mild fevers. As a result, the risk of developing asthma, as well as kidney, heart and liver damage is heightened
20/23 Connections between brain cells destroyed in early stages of Alzheimer’s disease
Scientists have pinpointed how connections in the brain are destroyed in the early stages of Alzheimer’s disease, in a study which it is hoped will help in the development of treatments for the debilitating condition. At the early stages of the development of Alzheimer’s disease the synapses – which connect the neurons in the brain – are destroyed, according to researchers at the University of New South Wales, Australia. The synapses are vital for brain function, particularly learning and forming memories
21/23 A prosthetic hand that lets people actually feel through
The technology lets paralysed people feel actual sensations when touching objects — including light taps on the mechanical finger — and could be a huge breakthrough for prosthetics, according to its makers. The tool was used to let a 28-year-old man who has been paralysed for more than a decade. While prosthetics have previously been able to be controlled directly from the brain, it is the first time that signals have been successfully sent the other way
22/23 Aspirin could help boost therapies that fight cancer
The latest therapies that fight cancer could work better when combined with aspirin, research has suggested. Scientists from the Francis Crick Institute in London say the anti-inflammatory pain killer suppresses a cancer molecule that allows tumours to evade the body’s immune defences. Laboratory tests have shown that skin, breast and bowel cancer cells often generate large amounts of this molecule, called prostaglandin E2 (PGE2). But Aspirin is one of a family of drugs that sends messages to the brain to block production of PGE2 and this means cancer cells can be attacked by the body’s natural defences
23/23 Potatoes reduce risk of stomach cancer
Scientists have found people who eat large amounts of white vegetables were a third less likely to contract stomach cancer. The study, undertaken by Chinese scientists at Zhejiang University, found eating cauliflower, potatoes and onions reduces the chance of contracting stomach cancer but that beer, spirits, salt and preserved foods increased a person’s risk of the cancer
But how can design help to shape the future of death, and what exactly is service design anyway? Service design teams are collaborative and interdisciplinary, with a results-driven emphasis on problem-solving. Examining an obstacle from a designer's perspective affords the opportunity to analyse and solve it systematically, effectively and in a sustainable way. The rapid growth of the UK's service-design industry has seen organisations ranging from the National Health Service to multinational banks using its innovative approach and methodology. The Nile team was in no doubt about the importance of the subject matter, or about dedicating their time and expertise to assist a collaborative project between the next generation of service designers and an institution as highly esteemed as Royal Trinity.
"The end-of-life experience is something everybody has a vested interest in, because we're all impacted by death in one way or another," Ronald says. "Culturally, we spend more time and energy trying to keep people alive, while ignoring the value that we can create for those who are reaching old age or facing terminal illness."
Studies show that just 30 per cent of people have ever talked about their wishes around death, and for those aged 75 years and over – an age group who might be expected to have greater concern about illness and ageing – the figure is still only 45 per cent.
This growing trend was the key reason that De Leon and his RCA students became involved with Trinity. "Death and dying are part of the human condition," he says. "There's not enough debate [in society] or willingness to confront something that really is inevitable for everyone. It surprises me that the hospice movement is not given greater attention. With an ageing population, and considering the nature of the illnesses we will face, we need to find new ways to support people at the end of their lives.
"Public services are often designed in terms of workflow – how transactions move through a process," he continues. "As service designers, we start by designing the experience first and then engineer the process to figure out what kind of service is needed. We're in the business of designing citizen-centric services, to really understand the needs of people receiving them."
This is not the first time that service designers have taken an interest in end-of-life care. Jeni Lennox, one of Nile's service designers who assisted the RCA students in their research, had already completed similar work at Highland Hospice near Inverness. "The focus of that project, as with Royal Trinity, was on how we can change the perception of the hospice from somewhere that you go to die, to instead being a resource to maximise the amount of life you have left, whether that's a couple of years, months or weeks," she explains.
"Both projects have shown that we are able to manage pain and symptoms by examining and treating the person as a whole. Sometimes it's a matter of organising companionship or simply emptying a bin in someone's room – everyone has different needs, and these aren't always met by medication alone," she says.
Ronald Jones, an associate professor at Harvard Business School in the US and a globally acclaimed service designer, has carried out similar work for hospices in Stockholm, Sweden, which helped to inform his contributions to the Royal Trinity project.
"[My work in] Stockholm highlighted that we're not designing things; we're designing time, as is the case with service design generally. Specifically in relation to hospice care, we're designing a very limited amount of time," he says. "Let's be frank: it's scary to be in a hospice environment for those of us who don't see the end of life coming yet. But if you can put aside those fears and discover your role as a designer, physician or nurse, there's a lot of wisdom to learn."
When De Leon approached his students with an invitation to influence the future of death and dying in Britain, he knew that it was a fascinating design challenge, but also felt that it was important to highlight the seriousness and gravity of the subject matter.
"I told them that this would be one of the most challenging projects they'd ever do, and it would confront them with a set of issues in an environment that they may not be prepared for," he says. "But we actually found there was huge interest in examining the end-of-life experience from a design perspective. In the end, we were over-subscribed with students wanting to participate."
Working in groups, the students analysed and identified ways to improve Trinity's service offering. The service-design approach requires a willingness to reimagine anything and everything within an organisation in order to improve internal systems and user experience. The results of an analysis can be anything from a colourful visualisation of how an organisation functions to the invention of a brand new service with a competitive advantage.
For all the designers working at Royal Trinity, the biggest surprise was the benefit of improving simple, everyday patient experiences. Fang-Jui Chang, one of the project's student designers, defined three areas for improvement: palliative care, administration and enjoyment. "Our research showed that most people find it quite difficult to navigate between the support options available," she says. "Our suggestion was to create a digital platform to provide a personal timeline and specific information to patients, based on their individual condition and needs."
From an enjoyment perspective, students explored catering options that better suited patient needs. "When a person is very sick, they aren't able to eat normal food comfortably," says Chang. "So we looked at ways to make meals that were nutritious, enjoyable and tasty, but in an easy-to-eat jelly-like form. Changes that seem small can make a big difference to a patient's experience and happiness."
Entertainment was another development area for the service designers, and Jones emphasises the importance of observation and interaction with patients in understanding and identifying ways to meet their needs effectively.
"The biggest shocker for me was the significance of distraction," Jones says. "We couldn't figure out why patients were constantly gathering around a television to watch game shows. By talking to them, we discovered that the distraction it offered was the source of its appeal. When we realised this, we began exploring options for other forms of distraction and interaction."
It's been eight months since the project began, and the observations so far are remarkable. "Introducing design into this very sensitive area has been an important step towards achieving that wider public conversation we're seeking," Jones says. "And there's another aspect that I didn't initially consider: bringing back wisdom from the lip of death. I'm not saying that people suddenly have majestic revelations – although sometimes they do – but there's an untapped reservoir of wisdom that seems particularly accentuated at the end of life."
For Royal Trinity, the project has been more successful than they ever imagined. "From a hospice specialist's point of view, it was incredibly enlightening that the service-design team created this detailed flow diagram to demonstrate the role of death and dying in our lives," says Pounds. "It enabled us to understand and reconsider the services we provide, as well as to reflect on the trigger points within a lifespan that might lead people to us.
"Our tagline is 'living every moment', and the service designers took this seriously. They considered not only the 'dying' aspect of our services, but the 'living' aspect too."
The decision to open a new centre, Trinity's House, in early 2017, has been the most tangible outcome of the redesign project. Although this centre will cover the same catchment area as the original hospice, it will embrace a different approach, one that aims to expand the presence and role of Royal Trinity within the communities it serves.
The purpose of Trinity's House is to bring the expertise of the Royal Trinity Hospice to a wider audience, such as older people, carers and the families of those near the end of life, as well as to normalise talking about death and dying in a public setting. "We're not planning to offer more beds, as the new centre's purpose is not to provide another inpatient centre," says Pounds. "We're planning instead to be community-facing, to provide outpatient services and to be the go-to place for information, advice and support on all end-of-life matters."
The service designers have proposed that three interaction levels should be reflected in the physical design of Trinity's House. The first layer will be public-facing, allowing anybody to walk in off the street and engage with Trinity's purpose. It will include a café, a multi-purpose events space – for entertainments, or distractions – an open entrance and an information area. The second layer is set to be semi-public with a garden, outdoor seating areas and space for drop-in and one-to-one sessions. The third layer will include an open kitchen and dining area, quiet reflection spaces and facilities for education and exercise.
By separating out services and offering new ones, the service designers believe that Trinity's House has the potential to change perceptions about hospice care and to get people talking about death and dying. "We believe by creating a space for conversations about death and dying that aren't cut off from society, Trinity can help to normalise these issues," says RCA student Lilith Hasbeck, whose group developed proposals for Trinity's House. "The centre will focus on individual need from a new viewpoint and be able to reach a wider cross-section of Trinity's community."
Royal Trinity is still in the process of selecting a building to accommodate their new centre, but the hospice's next steps will be determined by the service designers' findings and recommendations. In terms of selecting the right physical layout, Alison Killing, a Rotterdam-based architect and urban designer who specialises in buildings related to healthcare and death, stresses the importance of architectural design that keeps well-being and human experience in mind.
"Natural daylight, space and greenery – those are clear ways forward for designing spaces such as hospitals and hospices," she says. "Studies have shown that those things have a major impact on recovery times, result in reduced pain perception, and even cause patients to think that the food is better and the nurses and doctors are nicer."
These design factors are often overlooked by the sector because of constraints in terms of budget and practicality. "There are the architectural demands of the bureaucracy to consider: ducts, cables and machinery that must be fitted into the design and kept in certain temperatures and conditions," Killing says. "It can be difficult to strike a balance between the different needs of an institution."
The idea of a separate centre catering to the more human side of end-of-life care, then, seems like a welcome and meaningful progression, one that looks to the needs of the ever-changing present rather than focusing solely on the inevitable finality of the future. It's a fitting testament to Trinity's rich tradition of public service over the past century and a quarter.
- More about:
- Royal Trinity
- Royal Trinity Hospice
- Royal College Of Art
- Ronald Jones
- Sarah Ronald
- Office for National Statistics
- Lauren Razavi
- Highland Hospice
- Trinity's House
- National Health Service
- Fang-Jui Chang
- Alison Killing
- Nick de Leon
- Harvard Business School
- Jeni Lennox