This October, the 9I制作厂免费 International Palliative Care Congress will be welcoming the Palliative Story Exchange, a unique initiative that connects interprofessional palliative care clinicians through storytelling. Anyone attending the conference is invited to share their story, listen deeply, and find meaning through story exchange, reflection, or simply listening to others in a safe and open space. Social worker, Rachel Rusch, and Palliative Care Physicians Alexis Drutchas and Ricky Leiter are the co-creators of the Palliative Story Exchange. Devon Phillips from Palliative Care 9I制作厂免费 spoke to Alexis and Ricky on zoom.
Devon Phillips (DP): Can you tell me about the raison d鈥檈tre for the Palliative Story Exchange. How did this get started?
Ricky Leiter (RL): I'm at Dana-Farber Cancer Center and was part of the faculty on the Harvard Interprofessional Palliative Care Fellowship, which is actually where Justin Sanders trained Alexis and me. Alexis was interviewing for the fellowship back in 2018 after practicing as a family medicine physician for many years. I was lucky enough to have been scheduled to interview Alexis and we immediately connected over our love of writing and narrative medicine and spent the whole time chatting. It was a great conversation. I was thinking, 鈥淚 really hope she ends up with us鈥 and she did! Fast forward to January 2020 and we were working clinically together and Alexis said, you know, 鈥渨ouldn't it be great if we translated our love of writing and storytelling into an event? We could get a bunch of our colleagues together in someone's backyard, around a bottle of wine and share stories of our experiences. Wouldn't that be great?鈥 I said, 鈥漼es, we've got to do this鈥. A month and a half later, the world shuts down and the COVID surge hit Boston. I was working in the ICU leading a palliative care team at Brigham and Women's Hospital. Alexis was over on the palliative care unit, doing consults at Mass General Hospital. We didn't see each other for months. But we texted back and forth. We were both isolated, scared, deeply affected by the work that we were doing. Alexis reached back out and said, 鈥測ou know, it feels like now is actually the perfect time to do this storytelling event鈥. So in June of that year, we put together a storytelling evening. We had 30 members of the teams at Dana-Farber and Mass General on Zoom. It was just this beautiful event, super powerful. People shared stories about caring for patients who were dying of COVID in the COVID units, going grocery shopping for the first time after the initial surge and how surreal it felt, and stories about everything in between. The event felt wonderful and there was this renewed connection. We started to hear from our colleagues that they felt the same way. So we thought we've captured something here and we need to keep going with it.Alexis Drutchas (AD): It was terrifying what we were seeing. I helped start an end-of- life COVID unit at MGH. It was very isolating and scary, and this event brought us together in a way that I don't think any of us have experienced before. These events are intentionally interprofessional. Even that first night we had storytellers and participants who were chaplains, social workers, NPs, MDs.
It brought people together and we learned new things about each other despite working sideby side for months or years. From there we started to do quarterly events, both live and on Zoom. We put importance both on those who want to volunteer to share a story and also those who want to participate; it's equally important to tell a story as it is to be an active listener. We generally haven't given directive prompts. We've had great experience from just saying, 鈥渨hat are you carrying home with you? What can't you stop thinking about?鈥 Because of that, we've been able to create a beautiful space of processing the suffering and grief that we witness. Some stories are raw and emotional, some stories are really funny, and many have a blend of both.Rachel Rusch, a social worker at the Children's Hospital in Los Angeles joined about a year and a half ago. We expanded from there. Our first large in person event was at the 9I制作厂免费 International Congress in 2022 and since then, by word of mouth and connections with various colleagues, we've grown the Palliative Story Exchange. We hosted a Story Exchange at Memorial Sloan Kettering鈥檚 4th Annual U.S. Celebration of World Hospice and Palliative Care Day and had 500 people that joined over zoom from all over the world. We had stories told from Nigeria, to rural Oregon and Toronto, Canada. We feel that this is an extremely powerful way to build community and create a shared sense of meaning, which we know from research can help to build people's resilience and sustainability in their work.
DP: If a Congress participant wants to come to this storytelling session, what should they expect? Do they need to prepare ahead of time?
RL: We would love anyone and everyone who's at the Congress to come to our event. We welcome people who have told many stories in the past and those who have never shared their stories. As Alexis said, we are very intentional about setting up a safe and brave space and we work with the storytellers beforehand so that that they're comfortable. People just love the environment. We recognize that not everyone is going to tell a story and that's totally fine. I would say is, 鈥渃ome in, be ready to listen, and ready to feel connected to your colleagues in a way that you maybe haven't before. It's a really enjoyable evening.鈥 People leave feeling better and with a new sense ofthe meaning in their work. They leave with a sense of rejuvenation too. What we find is that everyone gets something out of this.
AD: Usually about a month beforehand, an invitation with guidelines will be sent out for those who want to volunteer to tell a story. We encourage volunteers and participants from every aspect of the interprofessional palliative care team! We like the stories to be under 6 to 8 minutes. We encourage all stories to be written down and read so that there's no pressure to perform the story. In terms of preparedness, we encourage people to think about what is resonating with them at work and at home. Stories are not case-based, they're meant to be reflective and emotional and tap into the resonances and transferences between work and home and back again. Our goal is not to have these be perfectly craftedstories. Stories are meant to come from the heart and be shared in a comforting, warm environment with colleagues and peers. At the same time, having engaged, active listeners and participants in the audience is important to create this sense of community.
DP: Are you planning to house these stories on a database?
RL: It's a wonderful question and one that we're trying to think through right now. One of our events has been recorded but we wrestle with this to be honest. On the one hand, there's this intimacy, even in a larger group, and the sharing of your story doesn't go beyond that setting. That said, the stories are incredible and the feedback we've gotten from storytellers is that it's been such a powerful experience for them that they want to continue sharing these stories. Down the road, we'd love to have a podcast or a book, something like that. When I say these stories leave an impact, it's an understatement. They're just these incredible testaments to the work being done in our field.
AD: We want to be sure that people feel there is confidentiality and comfort when they are sharing their stories and reflections. So I think if we were going to record, we would reach out to the storytellers and ask for their permission, and we would pause recordings to not record reflections. Our goal looking ahead, is to build a larger community of practice. We're thinking about various ways to engage with and train facilitators to bring the Palliative Story Exchange back to their home institution or to facilitate Story Exchanges at different institutions around the country.
DP: Last word goes to you.
AD: I want to be sure to emphasize that every member of an interprofessional group is very much encouraged and invited to join us.
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