The Stay Room - Understanding Palliative Care Via Storytelling
Written By Avery Beavers
More Than a Game
As a Research Assistant working at St. Jerome's University, a university campus within the University of Waterloo, I had the incredible opportunity to collaborate with both Sheli O’Connor and Mark Godin from Hospice Waterloo Region, as well as my own university community at St. Jerome's, to bring a unique concept to life: The Stay Room.
The Stay Room is an immersive, escape-room-inspired experience, but with a twist. The goal isn’t to escape; instead, the goal is to stay in the rooms and experience the story of an individual with a serious illness who is receiving palliative-hospice care.
From Spain to Canada (Waterloo)
Our journey began with an amazing concept developed by Dr. José Luis Pereira, Ana Paula Salas Moreira, and their team at the University of Navarra in Spain. We were inspired by their innovative approach to educating students on palliative care and saw this an opportunity to adapt it for our own community here in Waterloo.
Our first and most important task in adapting the original script was to make the story resonate with students and young adults here in Waterloo. We decided to keep the center of the narrative on Ricardo, although made minor changes where necessary (i.e. we made him a 25-year-old from Waterloo rather than 35) and focused on his story with ALS. By localizing his story and making him a peer to the many student participants, we aimed to build an easier yet relatable pathway for Ricardo to help participants understand and acknowledge his experience. We wanted participants to see themselves in his shoes, to feel the weight of his diagnosis, and to experience this journey with him.
Building an Experience, Not Just a Room
Over four days, we welcomed 100 participants into Ricardo's story. The first two nights were dedicated to students from Health Humanities courses, tying the stay-room experience with their learning. The final two days were open to the broader university and local community.
The experience unfolded across several stations, each revealing a new layer of Ricardo's life. The feedback we received was invaluable, painting a clear picture of what connected with our participants.
The most highly ranked station was the "Art Studio," where participants were first properly introduced to Ricardo’s life. They sifted through his personal belongings and learned about his current life and values. This narrative was the emotional anchor. As one student put it, "The first room was very well curated to communicate who Ricardo is as a person."
From there, the hands-on activities provided tangible insights into how life can be with a serious illness. The station featuring assistive eye-tracking and voice command technology was a frequent "eye-opener." Participants experienced firsthand how it can be frustrating and challenging learning how to use accessibility tools even when navigating simple tasks. One person noted, "The difficulty we had with the computer puts into perspective about some of the challenges someone might face."
Perhaps one of the most poignant experiences was the wheelchair. For context, we had one group member sit in a wheelchair for the duration of the event, relying entirely on their teammates to move about within and between the stations. From one of our earlier sessions, one student who volunteered to be the wheelchair shared a reflection that stood out, "I was the person in the wheelchair, and I felt like such a burden (…) like wanting people to adjust me, it made me really sad." I think this quote perfectly exemplified the message we tried to emphasize, which was the impact that the dependence accompanying serious illness and the loss of (executional) autonomy has on the person themselves, but also those around them.
What We Learned
Our greatest success, strongly supported by the data from our entrance and exit surveys, was dispelling a common myth about palliative care. Many of our participants expressed a newfound understanding that palliative care isn't just about the end of life; it's about improving the quality of life at any stage of a serious illness. As one participant wrote, "I understand that they are not necessarily the same thing, this experience has taught me a lot about the difference between the two."
The cultural adaptation was also a success. By making Ricardo a younger person from their own community, the experience felt immediate and more real to students participating. One comment from an attendee demonstrates this, with them saying, "Absolutely! Seeing this happen to someone so young makes it very real for us."
Looking Ahead
Of course, a pilot project is always a learning opportunity. The most common piece of feedback was the desire for more time. Participants felt rushed and wanted more space to read, reflect, and absorb the powerful emotions in each room.
We also learned a lot from the insightful suggestion to frame the event less as an "escape room," which implies speed, and more as a "simulation." This shift in language could encourage future participants to slow down and immerse themselves even more deeply in the scenario.
I'm so honored to have been part of this project, working alongside an incredible team and with the indispensable help of student and community volunteers. We are already planning to run another Stay Room later this year, hoping to make it even more accessible to the wider community. It's an experience that sparks difficult but necessary conversations (such as the importance of advance care planning), and as one participant beautifully put it, it reminds us "That talking about death shouldn’t be scary, it’s important."