MINNEAPOLIS — There is a part about going to the hospital that we often forget about: Navigating an already difficult situation with perhaps a language barrier or a cultural barrier is a reality many immigrant families face.
To tackle this issue, Children's Minnesota has been working to redefine the words "patient advocacy."
Back in 2019, when then-15-year-old Marielena Chacon walked into the hospital for what she thought was an iron deficiency, she didn't expect her whole world to change.
"As we were going up to the floor, I saw one of the nurses — her badge — and it said 'cancer and blood disorders' and I thought, 'Oh, I might just have really bad anemia,' and nothing bad came to my mind," Chacon recalled. "I didn't think, 'Oh, I have cancer; I'm on the cancer floor.'"
After she was admitted, her doctor told her about her diagnosis.
"He was like well you have leukemia. Do you know what that is?" she said. " And I said yeah, it's a blood cancer. And I think it was really hard to process...just what was going to come."
Getting news like that so young is an unimaginable task. At that time, she was also having to explain and interpret some of that news for her mother.
That's before Patty Santos, the limited English proficiency patient advocate, stepped in.
"Most of our interpreting, you know, is going to be for the parents. If they're a child that's born in the US, and they go to school here, they're going to have English," Santos said. "But they're still children and especially in our case, they are dealing with this diagnosis. So we never want to put a patient in the situation of having to interpret for their parents."
Santos said they do the same for other family members. No matter their age, they're never asked to be the interpreter.
Santos' role goes beyond just translating, however. As someone who works mostly with immigrants, she's an advocate for the entire family. She said sometimes the families she works with are undocumented, and her job also includes writing letters to immigration offices and explaining the family's difficult situation.
"Those are unique to the role of someone working with an immigrant population, where you have the language barriers, cultural barriers and many different communication issues and social issues that the family is going through," Santos said.
Outside of navigating big issues like that, Santos said she is there for her patients nearly every step of the way. She makes sure everyone involved in patient care understands the treatments and medications, explaining what each one does, why it needs to be taken and when.
Since her diagnosis, Marielena has gone through a lot. She went through chemotherapy, a coma, long days in the ICU and a subsequent hip replacement due to the avascular necrosis caused by chemo. She said having Santos through all of this was tremendously helpful.
"There's a connection here, you know?" Marielena said. "It's not just advocacy, and it's not just 'I'm going to help them in the professional [sense].' It's also, 'Do you need an ear to listen? Do you need someone to lean on?' There's sometimes my mom couldn't be here, and so it's hard to receive hard news by yourself as a 16-year-old. So Patty was here holding my hand, [telling me] everything will be okay. Patty has always been here to hand me a tissue, too."
And now nearly a year post-treatment, Marielena has started her sophomore year at St. Thomas. Santos is still here — as she was for the past nearly four years; as she was for Marielena's high school graduation; and as she hopes to be there for many other families.
Santos said she is passionate about her work and believes there should be more in her role in every hospital system.
"We need to do a lot more education around the importance of these roles, especially when we're looking at equity," Santos said. "Equity at the level of direct care; equity in terms of patient-family experience and in outcomes."
September is Childhood Cancer Awareness month, and Children’s Minnesota is highlighting Marielena’s story for their Shine Bright for Kids campaign.
The campaign focuses on fundraising for the hospital’s cancer and blood disorders program.
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