It’s bad enough that a young woman in St. George recently suffered a devastating stroke that left her paralyzed and unable to speak. Add to that her family lives hundreds of miles away across the border in Mexico and is unable to come to Utah to be with her due to COVID-19 and other barriers. To top it off, the family also doesn’t speak English.
One glimmer of hope for them has been working with Dixie Regional Medical Center caregivers, including the Palliative Care team who were brought in to meet with the family to provide hope, comfort, and guidance. The caregivers who helped include Samantha Koehn, LCSW, Karleena Twitchell, NP, Leslie Rasch, NP, Dan Afualo, LCSW, and Doug Wellman, chaplain.
“The daughter, who’s in her mid-20s, is completely paralyzed from the stroke and unable to communicate other than by moving her eyes up and down due to what’s known as ‘locked-in syndrome,’” says Samantha. “Thanks to the dedication of her caregivers and the use of technology, she’s managed to see and hear her loved ones.”
The Palliative Care team have been doing everything possible to keep the patient and family connected while they figure out the next steps in her care. One important step was setting up international calling from the landline in the patient’s room. Another step was figuring out the best way to work with Language Services during a time when in-person interpretation services have been paused.
“One unique challenge with communication is we’ve had to use a phone interpreter,” says Samantha, who says that’s been hard but incredibly helpful. “We’re used to communicating through an interpreter who we know and have a personal relationship with, and we’ve had to adjust to a new way of doing things.”
The Palliative Care team also received an iPad to use for video visits, which Samantha says has been a game changer.
“I think the video visits have helped all our patients, and especially this young woman, to feel less lonely,” she says. “We’ve moved her to daily video calls which have been less about the medical updates and more about allowing her to see and hear her family.”
Karleena says, “One of the hardest parts about the situation is this patient is stuck in her body without the people around her who mean the most to her. The most she ever responds is when we do the video calls. The other day she fluttered her eye a bit when I mentioned we’d just visited with her mom and sister, and then she just cried. It was heartbreaking.”
All of this has been a major challenge, but it’s truly part of their jobs with every patient, says Samantha. “I remember a conversation where her mom kept telling us how much she loves her daughter and asking us to give her the best care possible. It’s very hard for them to be apart. We’ve had some difficult talks about the prognosis and complications. We’ve also encouraged the family to take care of themselves with frequent self-care reminders. We know families can feel emotionally distraught when they’re separated during this time, and our support extends to them.”
Samantha and Karleena credit many caregivers with making the load a little lighter for this patient and her family. In addition to Palliative Care, the hospital care management team, led by Megan Chepkwurui, has worked hard to find financial resources, such as Medicaid, and addressing eligibility issues, to eventually transfer her to a permanent care setting close to the border where it’s easier for family to visit.
The Palliative Care team acknowledges neurologist Swati Laroia Coon, DO, and her team, Susan Campbell, nurse case manager, unit social workers, Jeri James and Amber Robinson, Language Services, the IS team who helped unlock international calling in the patient’s room, and the nurses and hospitalists at Dixie Regional.
“This is a tragic situation, but in the middle of it all it’s a beautiful illustration of multiple teams coming together on behalf of a patient and her family. We want to give her medical, emotional, and spiritual support while she’s with us as we work to get her closer to her family,” Samantha says.