Hospice Stories Project
Making hospice care accessible to all
The Hospice Stories Project, a collaboration between Minnesota Network of Hospice & Palliative Care (MNHPC), SoLaHmo Partnership for Health and Wellness (SoLaHmo) and ECHO, is building culturally relevant awareness around hospice care in Latino, Somali and Hmong communities in the Twin Cities.
“Hospice is a great resource for patients and their families. It may be covered by Medicare, Medicaid or other insurance providers. There are even hospice services for people who have no insurance. Hospice provides an extra layer of support. It gives families space for physical and emotional respite while caring for a loved one at the end of their life. It’s underutilized by everyone, but especially by communities of color and cultural communities,” said Susan Marschalk, executive director of MNHPC.
MNHPC submitted a grant to The Saint Paul Foundation and to F. R. Bigelow Foundation, and began building partnerships with SoLaHmo and ECHO to more holistically address the community’s need.
“This collaborative was based on the goal of sharing power and decision making, and engaging as full partners at every stage of the project,” said Shannon Pergament, researcher for SoLaHmo. “It has required a significant investment of time and a willingness on the part of all participants to engage with each other as equal partners in order to build a genuine collaborative.”
SoLaHmo used their strength as cultural connectors and researchers to create radio stories in Somali, Spanish and Hmong. These mini radio novellas are based on real interviews with families using hospice care and are accessible to elders and community members who often rely on radio as a primary source of information. SoLaHmo is also leading the effort to measure the effectiveness of outreach efforts.
“Community awareness is such a critical piece to the use of hospice and exploring cultural ways to discuss community needs is important to understanding gaps in services. By presenting topics like hospice care in culturally specific ways, these unique traditions and values are highlighted. This way, hospice doesn’t have to be something new and can work as an added component of support to existing care for families,” said Mai Bao Xiong, community researcher for SoLaHmo.
ECHO leveraged their expertise in video storytelling to reach diverse communities and created multilingual videos covering the basics of hospice care. These videos serve as a starting point for conversations between family members and health care providers, focusing on the unique cultural experience of each community.
“Hospice care is available to everyone, but if it’s not presented to families and patients in a way that incorporates their traditions or culture, it becomes a health equity issue,” said Marschalk. “They don’t know what it looks like, how to access it or even what questions they should be asking.”
Feedback from community members and health care practitioners has been positive. MNHPC’s next steps include developing a provider curriculum to increase awareness and practice that incorporate cultural considerations.
“This is just the beginning,” said Marschalk. “There’s still much opportunity left to learn from communities. It takes a large investment and time to build strong relationships, but if you are going to do work that lasts, and create a sustainable process, relationships are really what it’s all about."