To learn a bit more, the colleagues interviewed more than 75 members of the Somali community – including patients and clinicians – on their healthcare experience during the pandemic. Consistently, end-of-life planning was mentioned as a top concern, including the current health care directives. Not only were HealthPartners forms unavailable in Somali, but certain phrases and words were causing patients to lack trust and willingness to complete a directive – even when it was helpful.

For Anabel DeJuan-Gomez, Experience Manager at Regions Hospital, and a key partner in the work, the community feedback was absolutely critical. 

“The voice of the patients, families and communities we serve should guide our work, said Anabel. “We have very smart people… who know how to run a healthcare organization, and this is an asset we can offer to our patients and families. But this is one part of the story. We do not know the life story of a patient, which is critical to guide the plan of care and understand how to best serve them. One does not work without the other.”

In response, Munira and Shukri engaged key stakeholders to appropriately translate the health care directives to Somali. The Park Nicollet Foundation agreed to support the request, and Anabel started a string of connections including Emily Furseth, Program Manager, Advance Care Planning, and key contacts in Forms, Interpreter Services and Clinician Education Services.

Together, this group met and decided that the new form would be an adaptation of the original

versus an exact translation – allowing them to incorporate the feedback from the 75 community members and ensure that language was as inclusive and culturally appropriate as possible. They also provided detailed edits for all three versions of the form.

“Rather than being a direct translation from the source document, the forms were first reviewed for cultural congruency, said Emily. “We removed some phraseology that had been identified as concerning and added language to increase comfort with the conversations and the forms. Our hope is that the forms will help patients and clinicians who otherwise may not have used them, to have important conversations about wishes at end of life.”  

Some of these culturally informed edits included:

• Removing the word “ritual” from the section for end-of-life preferences and traditions as well as removing the question about organ donation while still leaving space for those who would like to share their preference.
• Editing a question that asks patients to define their “quality of life” to become more narrative and allow patients to share wishes and values in their own words.

Adding a prompt for sharing religious wishes. It states: “My wishes for religious care (for Imams, prayer, Quran recitation) are…”

In November, the updated health care directives became available through Epic, the patient education catalogue, Forms on Demand and the Advance Care Planning myPartner page. They’re also posted on HealthPartners.com so that anyone in the community can use them.

Led by Munira, the team has also shared the health care directives with key community contacts and plans to present the forms and findings on Somali end-of-life care with other leaders at HealthPartners. In many ways, the effort has also been a personal victory for her – serving as a step in the right direction for those friends and family members who inspired their efforts.

“Our hope is that the conversation will begin in the clinics before the patient arrives at the hospital,” said Munira. “This will normalize difficult conversations, and patients will not be hearing them for the first time in the hospital. It is crucial to hear information several times, especially from their primary care providers, with whom they have a trusting relationship.”

In addition to the Somali translation, healthcare directives are now available in Spanish with hopes to create Hmong, Vietnamese and Russian versions following a similar process.