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A job that takes heart
Much of the work is about being there for people during an extremely difficult time and listening to patients’ spoken and unspoken needs. And the work is not easy.
Devine said the patient navigation team sees a lot of suffering, and not all of it due to cancer.
“The social circumstances that people are facing can just be dire,” she said. “The social situations are sometimes harder than the cancer.”
Losing patients is hard, as well. Yang still thinks about a couple who traveled to Seattle from Hawaii for the husband’s care. Unfortunately, his cancer was much more advanced than they realized and the man died soon after starting treatment.
“They thought they had a lot more time,” she said. “I ended up helping her get the funeral set up, helping her request the records. It’s hard to navigate that process. I was able to make it a bit smoother for her.”
That couple holds “a special place in my heart,” Yang said. It was working with them that she came to understand the importance of what she does.
“That was the moment I realized this role isn’t just about helping fill out paperwork or finding resources,” she said. “It’s being a cultural navigator too and helping these people get through a really difficult time with a bit more support.”
That support extends to each other, as well. Devine said she is proud of how her team has all pulled together to help patients and one another.
“I don’t think any of our team will ever be immune to the compassion fatigue,” she said. “I try to remind my team that as hard as the job is, they’re kind of a bright spot for people oftentimes. There’s an atmosphere of caring here and I think people really value that.”
Sharing their patient experiences with one other helps, too, Yang said.
“It helps that the other navigators experience the same thing,” she said. “We all remind one another what we’re doing is meaningful. We don’t have the ability to cure a cancer or give someone a home, but we can make a difference.”
A sensitivity to bias
For Deas, sharing these resources with the community is critical.
“Patients don’t know they have these resources available,” she said, adding that her own uncle, who lived in Tacoma, recently died of throat cancer, which if caught early is often survivable.
Unfortunately, his cancer was misdiagnosed for years.
“With African American men, a lot of things are misdiagnosed,” she said. “It took one smart ER resident to finally figure out he had throat cancer and not a sore throat or bronchitis. By that time, it had spread. He had surgery, but they didn’t get it all.”
After surgery, she said, her uncle developed a lump.
“When I addressed it with his medical team, they finally tested it and confirmed that the cancer was back and it was aggressive,” she said. “My uncle ultimately died. But had he had some of our transportation resources, he might have decided to travel to Seattle for his treatment. He was a proud man and convenience played a major role in continuing his care locally. Patient navigation would have made a big difference in my uncle’s care.”
Deas said experiences like that have prepared her for the work she does with cancer patients today.
“Because of the things I’ve been exposed to, I have more sensitivity to the challenges people are going through,” she said.
But navigating the system for patients is only part of what needs to be done to improve health outcomes, she added.
“Getting people access to care is a good thing for the community,” she said. “But we need to do a lot better with building trust, getting more Black, Indigenous and people of color into our trials and getting our boots in the community. We have to invest.”
Respecting other beliefs
Exhibiting cultural humility and respect is how navigators build trust, she said, whether it’s recognizing cultural practices or respecting family power structures.
“Somebody who doesn’t come from an Indigenous background may not understand the use of ceremonial tobacco or may not understand wanting to try alternative methods to control their pain,” Deas said. “As a team, we need to recognize that there are different ways to get to the solution; you have to respect people’s beliefs.”
And that can sometimes be difficult, she said, recalling one family with an adult daughter with cancer. Instead of speaking directly to the patient, the family requested the doctor share the prognosis and treatment recommendations with the head of the family.
“The grandfather made all the medical decisions for this family,” Deas said. “And at first, the care person on the team was like, ‘I’m not talking to him. She has to make her own decisions.’”
In such cases, patient navigators need to set conventional beliefs aside and respect the family dynamic, Deas said.
“We may not like it and they may not get treatment at all,” she said. “In that instance, this female was scared and she counted on her support system to make the best decision for her. Regardless of how we felt, it was not our decision, it was theirs. Ultimately, the care person was able to talk to the elder and present everything.”
Measuring success, moving forward
Mendoza said the OCOE is currently analyzing data from patient surveys to measure the effectiveness of the program. Results will most likely be released next year.
“We’re looking at from when we first brought in the patient navigators for Indigenous and Black/African-descent populations [about 18 months ago],” he said. “That’s when we reoriented things from being a crisis-care model to one that is proactive and longitudinal in nature.”
His hope is that the program will prove successful enough that it can be expanded to Fred Hutch’s other locations around the Seattle area and elsewhere in Washington state.
“Offering this service to patients no matter where they’re being cared for would be fantastic,” he said.
But that requires funding, of course.
“Right now, some of our navigators are funded through grants which is wonderful but nerve-wracking,” he said. “What if the grant doesn’t come through? We’ve all seen that happen. Making sure the navigators are funded through the Hutch’s operational budget would be a wonderful way to recognize how important and essential they are to the care team.”
Even without the survey data to back it up, Mendoza believes the patient navigation program has absolutely proven its value.
“This is one of the most unheralded programs at our center but it’s one of the most important,” he said. “They elevate the institutions. Some of the stories they tell us of their encounters with patients are simply breathtaking. And some have to do with small things that make a huge difference to the patient.”
For Schalau, the metastatic breast cancer patient that Devine helped with financial resources, those little things can mean everything.
“In the beginning, I was in shock,” she said. “I called Anne a few times to get advice and a pep talk and she was very helpful every time. She hooked me up with the right programs; she’d also tell you to ask for this, be aware of that. Those little hints were lifesaving. And she didn’t pity me. She never came off that way. She even put my name in for a Christmas giveaway and I got some grocery gift cards. That was so sweet; those touches were just fabulous.”
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