When we talk about palliative care, long-term illness and death and dying, it skews towards older generations. But young people have a large stake in this discussion, especially as they are most often the immediate caregivers to their parents or grandparents.
Kelvin Kung is a young architect on a mission to suffuse architecture with love and care.
After spending ten years caring for his father who suffered from cancer, he decided to face what was then a trauma and turn it to some good. From intensive care units to palliative care, Kelvin remembered his experience in those rooms and feels that they could better serve all who use those spaces (doctors, nurses, therapists, caregivers and of course the patients), if certain design elements were rethought.
Kelvin, tell me a little bit about what you mean by an empathic approach to architecture? How can design can help?
I think architecture is at a crossroads. There’s one school of thinking where architects come up with this very powerful creative vision and drop it and people just have to live with it. I'm more of a fan of listening to what people really need: I try to understand how to create something that is going to help them in their lives, to make them feel welcome. For me, it's not about prestige or power, it’s about creating something that's approachable and connects people.
I came to this realization when I was a student at McGill. It was hard to understand what architecture was. I wondered why is it that we care about all these, like, you know, cool looking forms? None of it really spoke to me. I was born in Vancouver, my parents weren’t professionals, my dad worked away and my mom basically raised me and my brother. I felt there must be more to architecture, so I traveled and read a lot and realized that I want to do something that is about helping people.
EF: What turned your focus to health and hospital design?
KK: I saw an OAA (Ontario Association of Architects) competition this year and the subject was health and architecture. I've actually had a kind of phobia of hospitals because I spent ten years in hospitals taking care of my dad. He was diagnosed with cancer when I was in high school, and it affected me so much that I wasn't sure if I would even get to university. It was a very severe form of cancer and we were very distraught as a family; I was in and out hospitals every single day. When my dad finally passed away, I blocked out health care and hospital thinking completely. But when I saw the competition, I thought I know these spaces so well and I just need to be brave and lean into it so that I can help people.
EF: Help people how?
KK: I spent so much time in palliative care, and I thought this can be improved. I remember in my dad’s hospital room there was only one chair from my mom, so I sat on the ground sometimes. If we wanted to bring food for my dad, because in Asian culture food is so important and the smells are so comforting, I would have to go home, cook it, and bring it back. Or even his favorite music. He liked The Carpenters, the Beatles, but there was no speaker system, there was nothing. I would play it to him on my laptop (this was before iPhone!) and I remember his face would be relieved; he could forget for a little while. So I thought, I'm going to take this challenge and channel all my experiences into my design thinking. Everything came so naturally. I cried my eyes out a couple of times because I had all these repressed emotions, but I was naturally curious to research the state of palliative care, that the design and modular thinking came together quite easily.
EF: I’ve seen your designs and the changes are very subtle. Can you talk about that?
KK: Yeah, I researched a lot of palliative care room designs and my submission was about existing hospitals and their existing palliative care wards. My family and I were very thankful that palliative care was subsidized. We would have not been able to afford any supplemental services. I was coming from it as an average person: If you happen to be in palliative care in a hospital, how would you make small things that are realistic and improvable without having to redesign a whole building?
For instance, I was trying to design a simple kind of ceiling assembly that can integrate curtains that can also hide lights to have diffuse lighting; speaker integrators so you can just plug and play and listen to your favorite music and allowing for an escape. Also, integrating a kind of VR piece because I remember my dad wanted to go to church; if he had VR goggles, he could have participated virtually in a religious experience. As part of the seating conditions, I devised a second tier with a blackout curtain because I remember I had to do my homework while I was taking care of my dad. It was very hard to stay quiet and not wake him up. Nowadays, whoever is a caretaker probably still needs to provide for their families, they may have to take a work call. They should be able to do this without always running and trying to find a room. Lastly, a small dream would be to have a little kitchenette where a family can cook and talk about their favorite dishes. I think these small changes could bring a lot of value for patients.
I do Japanese archery and the concept of Kaizen is very powerful to me – small little changes that build up over time. When we're conscious of what small changes can do and we make them, the small changes can build up to be very big changes.
EF: What’s next?
KK: Ideally, if we get the funded grant to do all this research, I get to test it. I hope we get it because there are so many people, nurses, personal care workers, seniors, who have much to say about improving caretaking rooms. And at the end, I would like to publish a white paper to summarize the findings in the New England Journal of Medicine. And a TED Talk!
For another perspective, have a look a McGill’s “Giving rise to connection” series