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Ann H. Partridge, MD, MPH: Hi. I'm Dr Ann Partridge, and I'm a breast medical oncologist at the Dana-Farber Cancer Institute, where I also direct the adult survivorship program. Welcome to Medscape's InDiscussion series on cancer survivorship. Today we'll discuss disparities in cancer care and ways to deliver culturally competent care. First, let me introduce you to my guest, Dr Narjust Florez. Dr Florez is the associate director of the Cancer Care Equity Program and a thoracic medical oncologist at the Dana-Farber Brigham Cancer Center. Dr Florez's clinical interests include targeted therapy for lung cancer and the care of women with lung cancer, including their unique aspects of cancer survivorship. Apart from her clinical interests in lung cancer, she is a leading and productive researcher in cancer health disparities, and gender and racial discrimination in medical education and medicine in general. Welcome to InDiscussion.
Narjust Florez, MD: It is my true pleasure to be here with you.
Partridge: I like to ask each of my guests a question as a bit of an icebreaker. For you, there are two issues that I'd like to get at. First, what drew you to the cultural competency space? Second, why focus on younger women with lung cancer? Maybe start with the culture competency issue and then we'll move into the question about younger women with lung cancer. I suspect they're related.
Florez: The matter of cultural competency is a personal matter. My family and I experienced health disparities as soon as we arrived in the country due to language barriers and insurance issues. I continued to see that many immigrant families and underserved populations faced those struggles during cancer care throughout all phases of my training. Along those lines, my focus on younger women started in fellowship. I noticed that they are an understudied group with their own set of unique disparities, which includes delays in diagnosis. They're often not offered the opportunity to be in clinical trials, and very often many of them face a stigma and do not feel comfortable disclosing their diagnosis of lung cancer with their family and friends. I have patients who have told their families they have breast cancer instead of lung cancer because that tends to be more accepted in society. I think that's a large burden for these young women to carry on top of having lung cancer.
Partridge: Can you talk about the way that you approach — and would advise that we approach — patients who may not be like us, or may be like us and are trying to manage what you just described? You come at it from a place of cultural humility and appreciating cultural differences and perceptions. Do you want to comment on that?
Florez: "Cultural humility" is a term that was created by two social workers in 1998, after the riots in Los Angeles. This aimed to eliminate the power imbalance in medicine. Cultural humility has three basic principles. The first principle of culture humility is my favorite, which is lifelong learning. This is the opposite of stereotyping and unconscious bias. Instead of coming with assumptions about what survivorship looks like for some patients, we come from a position of questioning and trying to learn how patients see survivorship with their own eyes, because our culture affects how we see cancer survivorship. The second principle is to make sure we are trying to fix this power imbalance — the doctor, the patient, and the healthcare system — so patients feel comfortable. The third principle of cultural humility is accountability — not only to institutions but also to individuals to provide equitable care through all aspects of cancer care for all patients.
Partridge: That's wonderful. Three pearls of wisdom around cultural humility. Do you bring that into all of your patient care? How do you do that?
Florez: I try to. We have all been guilty of microaggressions, our own bias, and stereotyping. Medicine is largely based on putting patients into categories. That's how we learn in medical school. Practicing cultural humility involves removing those categories that we have learned for over 10 years of training. The first thing I ask my patients when it comes to cancer survivorship is how cancer survivorship looks to them. What is important to you? I practice the first principle of cultural humility because I'm trying to learn, and this is the lifelong learning principle. For some patients, running is part of their survivorship. For other patients, cooking a large meal on Sundays for family after mass is part of their survivorship. Approaching the situation with that mindset of trying to learn is what I do when I see each patient. When I find myself stereotyping, I first apologize and ask the patient, "What is cancer survivorship to you?" And we go from there. It is very good for our relationship with our patients.
Partridge: Patients feel that you are really listening, and you're trying to get to know who they are. Let me push you on that, though. I face this in my own clinic in survivors where — at least in breast cancer, and I would imagine in lung cancer, too — patients are often overweight and don't exercise. If it's a smoking-related cancer, you may have to get someone to try to quit smoking. You want to meet them where they are, but you also want them to change. You want them to improve their health behaviors. How do you approach that in survivorship in a culturally competent way? If a patient's idea of having a good time is having a big meal on Sundays, how do you help them to have the big meal on Sundays and at the same time, say, "Can you fit a little running in and quit the smoking?" How do you manage that because we are trying to modify behavior?
Florez: I often offer recommendations to my patients that are goal oriented. I'm going to tell you about a very recent patient. Her goal is to see her granddaughter graduate from high school. She has raised her granddaughter. How can we get her there? To get there, I tell her that we have to engage in these behaviors so she can get to that main goal. I often tell patients to visualize, because that really helps them. I'm trying to ask this patient to walk. She needs to walk before surgery, she needs to get to the goal. I ask her to visualize her granddaughter's graduation from high school, and it has been motivational for her because she has one goal. We also have certain times for her to achieve the goal. If clinicians say, "You need to walk," that's not very specific. I try to provide instructions within the patient's lifestyle, because she has to pick up her granddaughter from school, and that's what her life revolves around. We decided she is going to walk 15 minutes during this time span. There's also accountability, which is also a principle of cultural humility. When the patient comes back, I ask, "How many times did you walk for 15 minutes?" These have to be realistic goals because the 150 minutes of exercise that we want patients to do every week may not be possible for a patient who had a recent pneumonectomy. Goals have to be realistic, very set-up encounters in which clinicians can follow up to see if the goals were achieved. It can be challenging, particularly with smoking cessation.
Partridge: You must be an amazing doctor, trying to really understand each patient. Do you write it down in your notes in terms of, "Here's the goal I set with Mrs Stone…?"
Florez: Yes, because it's a very good reminder. I also write things that are important for my patients. I have a patient whose dog is her life. I write the name of the dog on every note so I remember. We do this to see that our patients are more than just their cancer, because that's what all of them want. They're not only the lung cancer patient; they are a patient with lung cancer who has a dog, and we're trying to get her to quit smoking, and she also has a granddaughter. That provides a more holistic approach, so that we don't see patients only as their disease but as the human they are.
Partridge: Taking that a little further, you do what you can in your clinic to support these patients. We all know that, in particular, underserved minority communities and people coming from other countries face access-to-care issues, especially after all treatment has been completed. From your vantage, what do you do to help these patients with resources or to try to increase access for those people to get what they need in their survivorship?
Florez: That's certainly true. When patients are in active treatment, it's all hands on deck. Everybody helps, their neighbors help, everybody helps. When treatment is completed, patients are left on their own, and they face a different type of challenge, which is the very strict follow up that we have. The need for CT scans and the need for the patient to see the doctor. Patients don't have the same level of support. Something that we have implemented at Dana-Farber that helps with survivorship is patient navigation. We have navigators that are disease specific because the patient's needs will vary by the type of disease. The needs of a patient with cervical cancer may be different than a patient with lung cancer. Patient navigation helps patients understand this very complex healthcare system and provides an additional follow up besides just the doctor's visits. Patient navigation has been successful in many studies across the nation. At Dana-Farber, we have implemented navigation for several specific diseases and also specific neighborhoods because social determinants of health affect your survivorship. When we ask a patient to go for a walk for 15 minutes, if she doesn't feel safe in her neighborhood, how is she going to go for the walk? Many patients are not aware that there is patient navigation and resources. We are creating a list of resources for patients, including foundations that may provide grants, prostheses, or wigs that can be obtained at a lower price. We provide resources and navigation that will be very helpful. It is very helpful to these patients after all treatment is completed.
Partridge: Patient navigation programs are really key to helping our patients when they're in this brave new world of cancer, which is usually very new for any person. Some people have had some family or friend experience. Patient navigation is especially helpful for patients who may not be able to work the system, and that's something we need to reach out to them about. If you have patient navigation at your center, that's fantastic. If patients and clinicians don't have a patient navigator at their center, how do you recommend they manage those kinds of supports? Are there other supports in communities or nationally that people can reach out to?
Florez: Yes. For lung cancer, there are several patient advocacy groups that are led and created by patients with lung cancer. These groups tend to be very mutation specific, such as the EGFR Resisters, the ROS1ders, and the KRAS Kickers. They provide that community with supports usually through social media because you may not know another person who has lung cancer. That provides a sense of community. There are also larger groups than those, including the GO2 Foundation and LUNGevity. If the patients do not have patient navigation at their institution, these two large organizations have a phone line that patients can call with questions and concerns Monday through Friday, and they can receive some guidance. Insurance can be extremely confusing for patients, as well when or how to get a second opinion. These groups are able to provide that [guidance] free of charge for patients.
Partridge: That's great. I know that, even more broadly, a lot of the national organizations have general navigation programs or disease-specific programs. Susan G. Komen has a breast cancer-specific navigation and community program. CancerCare, which is a national organization based in New York, and the American Cancer Society also have versions where patients can get some navigation. I would imagine they would be available in several languages, although I don't know that specifically. I assume the American Cancer Society, at a minimum, has Spanish.
Florez: Yes and no. The large organizations like the American Cancer Society may have Spanish resources, but a lot of these advocacy groups are still in English. The GO2 Foundation just completely translated their materials this year. Now, the Lung Cancer Registry in the GO2 Foundation is going to be in Spanish, too. There's still a gap when it comes to language not only in these phone calls or navigators, but also in the educational materials. We did a large study that shows the majority of educational materials in lung cancer are still in English. I am trying to work with the GO2 Foundation, and we're creating this series about myths in cancer for the Hispanic community. They're very culturally targeted to the myths that my gente tend to have when it comes to cancer that can delay care, like fear of having chemotherapy or fear of surgery spreading the cancer. We explore those in Spanish. But there's still a lot of room for improvement when it comes to language inclusion.
Partridge: As clinicians, we all need to keep working on that. Most importantly, even if there aren't resources there, we must be aware of these differences and the fears people may be bringing to the table. If we don't ask, we don't know what might be getting in the way of them optimizing their care.
Florez: Yes. I think something that is related to all of this is when we talk about patients, we need to understand their daily practices when it comes to survivorship. I use the example of a recent patient who I sent to a nutritionist, and she came back to me and said, "I'm not going to follow that diet. I have never eaten squash in my life. This diet has zero tortillas, zero beans, no rice — the main backbone of my diet." Having recommendations that are based on what our patients eat and what our patients do is important. Also, realistic recommendations are important because groceries are extremely expensive, and some patients may live in a food desert. If we are providing diets like fresh salmon with kale, I can tell you my older Latina patient will not eat that. Make realistic recommendations and support that are tailored to patient practices.
Partridge: That's great, and I think that's a perfect segue into another thing I want to bring up with you, which is financial toxicity. Not all things cultural and biased are also associated with finances, but how do clinicians managing cancer patients and survivors support our patients with regard to the financial toxicities that they face?
Florez: Yes, you are correct, Ann. 'Eighty percent of our patients' outcomes are associated with social determinants of health and 20% with clinical care. Your patient can have all the mutations you want, but that 80% will still have a higher burden and effects on the healthcare. Transportation and access to care are related to finances. One of the things is we haven't received training about financial toxicity during fellowship or residency. It's often a subject that people don't talk about. Cancer care is one of the top reasons why people file for bankruptcy in the United States.
I have a smart phrase to ask about financial toxicity in my note in Epic. The first step is to ask patients, because the healthcare system is always running and we're always running. The majority of the time, patients will feel ashamed to share this with their doctors, so they will keep it to themselves. What I say to any clinician who's listening to this podcast is the first thing you can do is ask your patient, "What is your copay for your cancer drugs? How are you getting your cancer drugs?" That's a way to get there. "How are you getting back and forth to appointments? Do you have enough food at home?" Those are some ways that you can ask and address access to financial services. Another thing is that a lot of patients utilize financial advisors in healthcare. Utilizing the financial offices in our hospitals can be very helpful for patients because this is all new, particularly to younger patients in which a cancer diagnosis is disruptive. They don't have life savings, they have children and responsibilities, and they need to stay in the workforce to keep their insurance.
Partridge: You hone in and ask them about a specific aspect of their care in order to open up that larger conversation around finances. Tell me how that goes. How do people receive that? Are they open to it? How do you do that, because I think a lot of us might have difficulty with that? Give us some pointers.
Florez: Some patients don't say anything. They say, "Everything is okay." That just opens the door because I have noticed that in their following appointment, patients bring it up. As clinicians, we open the door for them to feel comfortable. Some patients do say, "Oh, my copay is very high," and many of them may not even have been enrolled in the drug assistance program. Your team at the hospital can help them enroll in a matter of 15 to 20 minutes, and their copay can go from $900 a month to $20 a month. That's an action that we can take easily. When it comes to transportation, the American Cancer Society has support for transportation, and some apps or rideshares are providing extra support for patients with cancer, but patients don't know about those resources. I think opening the door and connecting them with the right resources are very solid steps when it comes to addressing financial toxicity.
Partridge: That's great. I think we should add it to our targeted review of systems, especially when you're talking about starting people on expensive things, or if you're having them come frequently for visits, or you're seeing any signs of no showing. It may not be that they don't want to come, it may be that they just can't get there. It's very helpful. In our last couple of minutes, I want to touch on one issue, and that's our own biases and what we bring to the table. How can we manage that? As you said, we all have biases and have to recognize them. How do we manage that in our day-to-day when caring for people?
Florez: The first thing is what you just said, Ann — recognizing that we all have biases and self-reflecting. If you're conscious of your biases, you will be more careful. I have bias, and I come clean because we think the bias researcher probably doesn't have them. Yes, I do. Self-reflection is the first step. After that, realize how the interactions go with our patients and how we refer to our patients. I think that is also a very good test. I often go back and read my notes to make sure that my thought process is also not biased, because we often just dictate notes that can perpetuate stereotypes in patients. A lot of my patients are often labeled as anxious, then everybody stereotypes that patient as an anxious patient. If you're 30 years old and have a 5-cm tumor in your lung, you would be anxious, too. Also, the more you diversify your experiences, the better your biases get. Diversifying experiences means practicing the first principle of cultural humility, which is lifelong learning, and that will help us. But the No. 1 thing is knowing you have them and trying to mitigate them.
Partridge: Fantastic. I've really enjoyed this conversation. Today, we've talked with Dr Narjust Florez about cultural competency, lifelong learning, staying humble, having humility, and meeting your patients where they are at diagnosis and through survivorship to optimize their care. Thank you for tuning in. If you haven't done so already, take a moment to download the Medscape app to listen and subscribe to this podcast series on cancer survivorship. This is Dr Ann Partridge for InDiscussion.
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Cite this: Cultural Competency and Cancer Survivorship: Humility, Lifelong Learning, and Effectively Communicating With Patients - Medscape - Aug 24, 2023.