I’m a designer working to make hospice care better for seriously ill children and their families. Ask Me Anything
Hi Reddit! I’m Ivor Williams, Senior Design Associate at the Helix Centre at Imperial College London.
I lead the end-of-life care projects at the Centre, exploring British hospice care and taking a human-centred design approach to unlock the potential of technology to support seriously ill children and their families.
Hospices provide holistic care for children, young people and adults from the point at which their illness or condition is diagnosed or identified, all the way through to the end of their life, however long that may be. Common misconceptions of children’s hospice care are that they are very sad places and are only for children who have a very short time to live or who are likely to die. On the contrary, hospices are incredibly life-affirming spaces, full of positivity and light, offering support to children with a variety of diseases and conditions, sometimes for long life spans.
I firmly believe design can both improve the quality of life of those living with life-limiting or life-threatening diseases and their families, as well as play a role in shifting perceptions of hospice care.
A bit of background
Research and innovation in children’s hospice care are underdeveloped, largely because the diseases and conditions which require hospice care are often very rare, and so the evidence base is lacking.
Breakthroughs in medical treatments in recent decades mean children are living longer with difficult conditions, which is a great thing. However, this also means the complexity and needs of children requiring hospice care are growing. We need new processes to respond to those needs, and for their families.
About my work
I work at the Helix Centre – an innovation lab working at the heart of healthcare – which is an integral part of the Institute of Global Health Innovation. Along with colleagues who work in health policy and design, we are trying to unlock the potential of technology to create products, services and experiences in hospice care, such as peer support programmes, advance care planning, memory-making and legacy. I work with other designers, technologists, academics, children and families to see what exists and then use design methods and processes (such as prototyping and workshops) to come up with creative solutions to those needs.
Case study: Chiara chatbot
As an example, we created a prototype service for parents who care for their children at home. We understood from families that without the support of a hospice, the experience of 24-hour care is endlessly exhausting and they can become quite isolated without proper support. The hospice can act as a great connector to professionals and other family groups. So, we developed a technology prototype, Chiara, which used a conversation agent (‘chatbot’) to identify the needs of the child and the family and suggest personalised recommendations to groups and services in the hospice. We worked with a leading charity to test and iterate the prototype with families. It is just one of many prototypes we’re creating at the Helix Centre.
Profile page: https://www.imperial.ac.uk/people/ivor.williams
Project case study: https://helixcentre.com/project-childrens-hospice
About the Helix Centre: https://helixcentre.com/
UPDATE [1PM ET / 6PM BST]: Thanks very much for your great questions everyone. I’m heading off for now but will be checking back in tomorrow, so please do submit any more questions you may have.
And a big thanks to r/IAmA for hosting this AMA!
Yes - in fact, as soon as we started researching children’s hospices, we learned that almost all the care is delivered at home, especially for children living with physical disabilities or cancers. Many families will spend time in and out of hospitals, and with some regular stays at hospices, but the care at home presents a lot of challenges.
With that in mind, we identified the role that technology could play to help keep families connected to care teams, and also to other families. That’s the chatbot, Chiara, I mentioned in my blurb above.
What design elements (color, shapes, etc) have you discovered are the best to promote a hopeful/comfortable atmosphere rather than one where people “go to die”?
What differences in design have to be acknowledged when designing hospices for children rather than for, say, the elderly? What things are the same?
To design something effectively, we need to first of all understand the needs of people who would eventually use what we create. In the case of a children’s hospice, we learned that children and families want as normal an experience as possible - especially if they come and stay in a hospice.
One hospice we worked with - CHAS in Scotland - go a long way to making their accommodation for parents look as luxurious as possible - they basically have 5 star hotel rooms! This gives parents a real thing to look forward to, in an otherwise difficult time, so they know they can relax a bit, and get some privacy, while their child is in the care of doctors and nurses.
The role of nature plays a fundamental role in hospice care - and any chance to bring natural life into a space (be it a plant or an outside garden) can bring lots of positive experiences for people. These things are the same for any age - we can all benefit from exposure to nature, giving us a chance to connect to beautiful smells, soothing shapes and playful activities like gardening.
What qualifies a child for hospice care if it's not their remaining life expectancy? How do you handle those children who are very reluctant to go to the hospice (or similarly if parents are very reluctant)?
Great question - and this is a big challenge for hospices: how to effectively engage with families who might be very hesitant to visit or come to a hospice. We learned that families and children think that hospices are ‘places to die’ - which is so far from the truth. Although sadly children may end up dying from their conditions or health problems, so many others will spend years visiting a hospice for respite, support and activity days.
With regards to ‘qualifying’ for hospice care, any child that is affected by a life-limiting or life-threatening condition is welcome at a hospice - this includes siblings as well!
If families are given a small amount of information that is disarming - say, learning about hydrotherapy or massages for parents - it can be a lot easier to cross the threshold of a hospice.
Thanks for doing God's work. I imagine it may be heartbreaking work at times. Will you talk about any lessons you may have learned from so many patients approaching end of life circumstances?
I’ve been grateful to have spent time with children, young people and families and I suppose the biggest lesson I’ve learned is that no matter the pain and trauma, it can always be in the service of something: parents of children continue to give their life, energy and emotion to helping others in similar situations.
Does the religious or spiritual needs of families impact design and if so, how do you balance different traditions in a public facility?
Do you design experiences that feel like rituals or ceremonies even if they aren’t called that?
Finally, a book recommendation for something you found useful or inspiring (doesn’t have to be directly related to your profession).
I would recommend Design for the Real World by Victor Papanek. I mentioned it elsewhere in the AMA. Or Overstory by Richard Powers (the best book I read last year, so beautiful!).
Designing rituals is a fascinating area of our work, and yes, our advance care plan platform that we designed did this in a way. By creating a ‘tool’ that lets people capture their care decisions, and enable them to think about and plan their end-of-life, it opens up all kinds of opportunities for discussion, reflection and action.
I’m particularly interested in rituals or ceremonies for grief and bereavement, though we haven’t done much around it. Feeling connections to our ancestors and descendants is a hugely unique human experience, but I think we’ve lost a lot of that in our cultures. I’d love to do more around that.
Thank you very much for the opportunity to ask you about your work. It's very encouraging to hear that there is a lot of positivity in these settings. However, and I'm sure you get asked this a lot, has this always been your perception of end-of-life care and what led you to work especially with children, young adults and families using these services?
We get asked this from time to time! We began the end-of-life care work at the Helix in 2015, and it was very much focused in hospital settings at the start. Once we began to explore the issues, over time we found ourselves in people’s homes, away from the institutions of healthcare. Suddenly the stories about people’s lives came to the front, and what mattered most to them… It was an overwhelmingly positive experience.
For children, young adults and families, there was a similar experience: children are naturally playful, and the compassion of people working in palliative care means that every moment is cherished and focused on living as normal a life as possible.
It is incredibly difficult at times, but the care and dedication people put in is incredible. We saw that though things were done really well for many families, many were slipping through the cracks of support and we felt that design could play an important role in helping more people to get the care they deserved.
Have you ever personally designed or come across something that sounded good in theory but when implemented in real life was underused/impractical/etc? If so, were you able to redesign it in any way or learn from what didn't work?
All the time! As designers, you have to fail to get anywhere. We created an advance care planning platform that allowed people to capture their choices for end-of-life care (where they wanted to be cared for, the types of treatments they wanted or did not want). It was in many ways a success - thousands of people signed up and created these really important plans. However, in ‘real life’ it became very difficult to port the data across from setting to setting (e.g. from a person, to a doctor, to a hospital).
The more we learned about how data was shared in the NHS, the harder it became. In the end, the product failed because the problem was too big to solve. We re-designed the experience of making end-of-life care plans so that people could make the best decisions for themselves, but we weren’t able to successfully navigate the complex world of ‘interoperable data sharing’.
What color is your toothbrush?
Green with orange bristles!
How did you get into the field of design and innovation? I have a fellowship in design thinking and entrepreneurship and have done a lot of training in product and service development, but due to my major (molecular biology), I always feel overlooked compared to people from art and business schools. Do you just continuously put yourself out there until someone notices?
I did study design which obviously put me into the ‘right’ field, but the path from design to healthcare design wasn’t straight forward. My Bachelor's is in ‘visual communication’ and my interest in working in healthcare meant I just tried to find positions and opportunities that would slowly let me build up the right skills.
Timing is everything I’ve found with work - the Helix Centre was created in 2013/14 and the right project came along when I was trying to do more of this work. Keep trying and don’t give up! Connect to as many people as you can, attend the local meet-ups where people talk about the work you love and I’m sure it’ll work in your favour soon enough!
When you work with families, what’s a common theme among their concerns of sending them to a hospice vs home care vs hospital care?
For families with children, the biggest issue I’ve found is surprising: parents who have cared for their child for a very long time, often with complex diseases or conditions, are, in practice, more skilled and experienced than the doctors! They’ve picked up so many skills to support their child, which means they end up being the best person to do the care.
This means they can feel quite anxious about leaving their child to others (nurses, doctors) and so any place where they give up control (a hospice, a hospital) needs to cope with that. Parents are exhausted from providing 24-hour care, so they need a rest, and so being able to balance those needs is really important.
How did you get into this kind of work? Do you mind sharing a bit of your work history/background? Thanks!
Sure thing - I studied design at the Glasgow School of Art, and in my last year discovered a designer called Victor Papanek. He laid out an approach called ‘social design’ in the late 60s/70s, and said: “The only important thing about design is how it relates to people.” I took a lot from that, and worked as a commercial graphic designer for years before getting very fed up with it.
I went back to some of the things that really drove me as a person and my life experiences. I recognised that, as a society, we aren’t very good at dealing with death. I wanted to change that, so I found various ways to do more of that work: I wanted to design things that were created for people, not for profit. Helping design things that helped them live and die well. I joined the Helix in 2015 when they started the end-of-life care projects, and have been jokingly called the ‘death designer’ ever since!
I'm a builder who's starting an assisted living center for the elderly. What are some of the more important design concepts that you would want to adhere to? I'm not the designer but I'm curious about what I should be looking out for.
Great question - I hope the project goes well! With our work with older people, we learned that contrast was very important - the differences between walls, floors and ceilings. What may seem soothing to people with good vision is harder for people with poor eyesight.
The opportunity to personalise a living centre is really important too - there was a great project where residents were able to reproduce their old front door, and have it as a large image on their new residential home door. This meant they could keep a small piece of home whenever they went into their rooms. Very simple, effective and cheap! Any opportunity to listen to what the residents themselves would like, is always going to pay dividends.
What do you think of the NHS?
I think it’s a massive, important part of the UK. I think one politician remarked it was the closest thing British people have to a national religion! But that means everyone cares very much for it, so when it suffers, we all suffer. It’s saved my life in the past, so I think I’m a bit biased, to say I love it.
What's your proudest moment as a designer?
I always feel a bit proud when something we make is used by people, and they take the time to tell us! I co-created a mental health app called Cove, that uses music to help people with their anxiety and depression. We get emails and messages from people who told them it helped them get through some dark periods of their life… That means a lot.
What do you think about the wages CEOs and directors get?
(most don't know that the NHS mostly funds hospice care)
Well, the children’s charity Together for Short Lives reported in 2019 that children’s hospices receive on average just 21% of their funding from statutory sources (i.e. the UK Government which provides NHS funding) compared to 33% for adult hospices. Children’s hospices rely on donations and fundraising for the remainder of their costs.
From the directors and chief executives I’ve met, almost all have backgrounds as nurses, doctors and healthcare professionals who get into those positions after decades of service. I don’t know how much they are paid, but like the rest of the hospice sector - it won’t be enough for the work they do in my opinion!
Are there any big differences in design and support aspects of hospice care between the UK and the US?
Anything we ought to be learning from one another on?
I think in the UK, as we have a history of ‘innovation’ in hospice care, there is a spirit of exploration that exists, but does so in smaller pockets in the US. American hospices are increasingly profit-driven which contrasts with UK hospices, which are charitable. This has different pros and cons, but I think what they all have in common is making sure that the time that people have is focused on living and living well.
Both US and UK hospices see the change in community care and are wondering how best to service families remotely, out of the hospice buildings. I would love to see how the UK can learn from US hospices that can effectively provide remote care and care that is really developed by the community - there is the ‘Nuka’ system of care in Alaska which is hugely inspiring to me.
What does the iteration phase look like for your prototypes? I imagine there are the obvious budget constraints of any other non-profit, so do you start out with a set budget, or scale the project based on need?
We’re lucky that we’ve got an in-house team of designers and developers who can build almost any prototype that we need. We always start very simply, building paper prototypes or basic things that can get immediate feedback from people - say, families in the case of our children’s hospice project. We have fixed budgets for most of our projects - as we often get funding from Government or other institutional grants - that enable us to develop prototypes, test them, iterate and evaluate them.
One of the goals of the Helix Centre - like many innovation centres in Universities - is to ‘spin-out’ companies that can help bring a product to market. This allows us to scale our projects to get them into the hands of people who need them.
Allo! Hey, what would be the best way to show appreciation for your or other hospice staff's work? I recently lost my grandparents and the hospice people took amazing care of them.
I’m really glad to hear the experience you had was a good one - losing a loved one can be so difficult. Hospices always appreciate hearing how families experienced the service - they use feedback forms and such to hear the voices of family members. But if you wanted to offer up some time to tell them what worked/what didn’t… they will really appreciate it!
In the UK, hospices rely on charitable donations so that is always gratefully received, but more than that: they really appreciate when people can help others, so if you feel like offering your time as a volunteer to help those who are on a similar journey to you, I know that will be so helpful to another family like yours.
It seems like the term "hospice" is a big issue for your communication with families and just about everyone else.
Have you considered using a different term?
This question comes up a lot in the palliative care world. Most of these terms - end-of-life care, palliative care, comfort care - are new. ‘Hospice’ is a very old word, going all the way back to the Latin ‘hospes’ which refers to hosting people. It’s where we get the word ‘hospital’ and ‘hospitality’. Hospices have existed since the 10th century in Europe… So they are very potent in Europe and the ‘West’.
In response, many hospices are changing their name to better suit the idea of living well with disease, for a long time. It’s not just about the care of the dying, so their names reflect this.
I think there is a balance between cultural recognition of places that do a special, particular job (think ‘bank’ or ‘school’) and places that actively put people off entering in the first place… It’s a tough challenge!
Do the families know Chiara is a bot? How do they feel about that?
Yes they did - in fact, it was an early insight into the first version that the parents *really* did not like the idea that Chiara seemed to be presented as a person. They wanted to know that it was not a real person, so that if a person became involved in the conversation, they knew they were real. We avoided using any pictures of a person’s face, or avatar, to ensure that people wouldn’t get confused, for example.
Our feedback from families was that if it was clear it wasn’t human, that was ok.
Have you done any research into hospice treatment of patients in their own home? If so, could you elaborate or, if not, could you think of potential applications for your research to these patients?
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