A little cultural humility can go a long way toward achieving equity in cancer survivorship
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An understanding of patients’ cultural and historical health care beliefs can promote equity in cancer survivorship, reduce financial costs and even save lives, according to a speaker at Chemotherapy Foundation Symposium.
“As oncologists, we often talk about diagnosis — the challenges of diagnosis and disparities in diagnosis — but the patient’s journey only starts at diagnosis,” Narjust Florez (Duma), MD, associate director of the cancer care equity program and thoracic medical oncologist at Dana-Farber Brigham Cancer Center, said during a presentation. “We need to ask patients how they see their survivorship, what is important to them, and what their expectations are for cancer survivorship and the different phases of it.”
Survivorship phases
Cancer survivorship focuses on health and well-being from the time of diagnosis until the end of life, a period when survivors face many physical, mental and social challenges, Florez said.
“When many of our patients are first diagnosed, it’s all ‘hands on deck.’ Their neighbors are helping, people at church are praying, and friends and family post to social media,” she said. “However, most of that goes away as time passes and the survivor’s experience changes.”
Factors known to affect cancer survivorship include the associated comorbidities, performance status, social support and whether the patient is married vs. single, according to Duma.
“Cancer diagnosis and treatment is very stressful, and we often see a lot of marriages end during treatment. For patients, their marriage is affected by fatigue and other adverse effects from cancer,” Florez said. “[My colleagues and I] conducted a study in 2019 that included 400,000 patients with stage IV lung cancer. We found that the men who were married to a woman had better outcomes compared with men who were widowed, single or divorced. However, when we looked at this in women, it didn’t matter if they were married, divorced or single. Their survival was unchanged by this factor.”
Florez said that although divorce is common after a cancer diagnosis, it isn’t typically discussed between the physician and patient.
“The marriage may have already been in a challenging place but when we add the stress of cancer and treatment, that makes it even more challenging for a couple,” she said. “So, integrating caregivers into survivorship expectations and even calling them on FaceTime when the patient is in your office to make sure they are included and hear the information, too, is important. The same can be said for the adult children of patients — include them in the conversation via phone or FaceTime if they are unable to come into the office.”
Financial toxicity is another factor that influences the survivorship experience.
“Financial toxicity is real,” Florez said. “Our patients change jobs or lose jobs; they may change from full-time to part-time work and a lot of resources are spent on cancer care.” Even parking at the clinic impacts patient decisions, according to Florez.
“For example, I have two clinics — one has free parking and the other one does not,” Florez said. “All of my patients want to go to the second clinic, the one with free parking. We have better technology at the clinic with expensive parking, but the parking is what actually makes the difference for the patient, and that is important for us as physicians to understand.”
Clinicians should consider the financial impact of treatment schedules beyond the cost of parking and food, she said.
“We often forget that when patients are paid hourly, it is not only the parking that affects them or the mediocre lunch in the hospital cafeteria, but when they are at the hospital, they are not making money,” Florez said. “Patients are spending more money but not making the same money.”
Cultural, historical beliefs
Patients’ cultural and historical health care beliefs often influence their behaviors, Florez said.
“For example, some patients may take certain supplements or drink certain teas that can adversely affect their health. I had a patient who is Dominican who was drinking tea leaves from [a plant] that helps with weight loss. However, the tea made the side effects of hyperphosphatemia and hypomagnesaemia worse. Understanding our patients’ cultural beliefs can save our patients’ lives and reduce even more unintended health care costs.”
However, some nonmedical remedies do work, she added.
“I’m a fourth-generation doctor. My grandmother is a pediatrician and will give me tea for my menstrual cramps that, believe it or not, really helps. Grandma’s recipes are grandma’s recipes because they work and they pass from one generation to another,” Florez said. “Instead of dismissing the patient who brings that information to you, have open communication about it because they are going do it regardless. It’s better to ask them what remedies they use and go over the remedies to see if they will interact with their cancer medications.”
Other patients’ beliefs about the health care system stem from history, she added.
“There is also the issue of offering a patient a clinical trial and the patient responds by saying, ‘I am not your test subject.’ This comes from a place of fear, not from a place of confrontation,” Florez said. “Ask the patient what worries them about clinical trials and what they know about clinical trials. Some patients bring up historical events like the Tuskegee experiment, which can be difficult. Instead of telling them that you weren’t even alive when that happened, instead say, ‘I’m sorry that your community went through that. Let me explain to you what a clinical trial is in oncology.’”
Florez said cultural humility will help physicians interact with cancer survivors and understand the three principles — lifelong commitment to learning and critical self-reflection, desire to fix power imbalances within the provider-client dynamic, and institutional accountability and mutual respectful partnership based on trust.
“Take the time to understand a patient’s culture and rituals and adapt their care and treatment accordingly,” Florez said.
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Florez (Duma) N, et al. Cancer care equity and survivorship. Presented at: 40th Annual Chemotherapy Foundation Symposium: Innovative Cancer Therapy for Tomorrow; Nov. 9-11, 2022.
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