183: Advancing health equity through patient-centered communication
Respectful, patient-centered communication can play a huge role in improving health outcomes and helping eliminate health disparities.
In today’s episode hosted by Movement Is Life’s Conchita Burpee, we explore the critical elements of effective, patient-centered communication. Our guests:
- Dr. Mauvareen Beverley, an executive-level physician with 20 years of experience advocating for improving patient engagement and cultural competency and the author of the book, “Nine Simple Solutions to Achieve Health Equity: A Guide for Healthcare Professionals and Patients”
- Dr. Janet Austin, the founder of JSA Chronic Disease Foundation, a national nonprofit aimed at providing resources and support to help people who experience pain due to chronic diseases have a better life.
Beverley says effective doctor-patient communication starts with heightened human value for each patient, regardless of their background or circumstances: “Everybody talks about being respectful and this and that, but if you don't value me, you think respect is going to come into your mind or your brain?”
Austin shares her personal experience as a lifelong chronic disease patient in explaining how small acts of kindness from healthcare providers can go a long way.
“I was having a really rough time just a few months ago, and of course, I'm there to talk with [my internal medicine doctor], and I'm crying,” Austin says. “She actually said, ‘Janet, I'm going to go ahead and book you to come back to see me in three months, I'm just going to make time for me to listen.’ And I just… I left so optimistic because someone said that they wanted to listen.”
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The transcript from today’s episode has been lightly edited for clarity.
Mauvareen Beverley: I actually developed and copyrighted the SPOT methodology. S for doctors, S, speak to patients and families. P, pacify fears. O, outline what's important to the individual, not what you think is important to me; hear what I say is important to me. And T, Take, you know, recognize that the time it may take for somebody to accept the disease you know, and don't be judgmental if the person doesn't show up for the first visit.
Conchita Burpee: You're listening to the Health Disparities podcast from Movement is Life. It's being recorded live, in person and in color, at Movement is Life's annual health equity summit. Our theme this year is "Health equity solutions from health care leaders."
I'm Conchita Burpee, and I'm one of the steering committee members of Movement is Life. Additionally, my title in public and professionally, I own my own consulting company, and I am an expert in community based participatory research as well as community engagement and in marketing. Today, we're going to dive deep on the topic of advancing health equity through respectful, patient-centered communications.
I'm joined by two guests today who are going to help us unpack all of this. Dr. Mauvareen Beverley is an executive-level physician with 20 years experience advocating for improving patient engagement and cultural competency for all populations, especially African Americans. And Dr. Janet Austin is the founder of JSA Chronic Disease Foundation, a national nonprofit aimed at providing resources and support to help people who experience pain due to chronic diseases and helping them to have a better life. Both of you, welcome to the Health Disparities podcast, and thank you for being here, and thank you for your expertise.
Beverley: Thank you.
Janet Austin: Thank you.
Burpee: Janet, I'll start with you first. I'd like to start and say, can you tell us a bit more about yourself and what set you on the path of becoming an educator, an advocate for people whose lives are complicated by chronic disease and pain?
Austin: Well, when I was young and in high school, and around age 16, I was diagnosed with rheumatoid arthritis. And as you know, 16 is kind of the age where they're looking at adult onset rheumatoid arthritis. But because I was at that age, I was often referred to as one with juvenile arthritis, and so as a result, it I've had over 50 years now of living with chronic disease, pain, comorbidities and being involved in the medical health centers around the the U.S. as I've moved a good bit. So by being involved, I kind of saw some of the things that I wish were different, and some of the things that I really liked about interactions with the clinicians.
Burpee: Is this something that was, it runs in your family, or how did the disease come about?
Austin: They still don't know. They say that just what you said, that it runs in families, but they haven't been able to say that it's in any way a hereditary.
Burpee: All right. Well, thank you. Mauvareen, can you please introduce yourself as well and tell us about your journey in medicine with a focus on health equity and improving the health of Black Americans?
Beverley: Yes, my name is Dr. Mauvareen Beverly, and I think what's important, what led me to where I am today is being trained and my medical training at Harlem Hospital, I think back then, under the leadership of then Dr. Gerald Thompson, we were not expected to deliver anything except action excellent health care to everyone, regardless whether the person was addicted to narcotics or churchgoer, the human value was extremely important, and we were not allowed to make any distinctions between the care that we deliver based on who or what circumstances that individual had. And I think over the course of time, when, after I finished training at Harlem Hospital, I went back and worked in community health centers where I grew up in the Bronx. And subsequent to that, got married, and I have my amazing husband and three sons. You know, I live in a testosterone-driven household, but and now I'm a join the grandma club, and I have a grandson.
Burpee: Oh, congratulations.
Beverley: Thank you. And I think what happened is when I decided to go back to New York City Health and Hospital I was I was asked to develop the first care management program, and back then, think it was around 2008 or so, Care Management was not a major buzz word, but the person who I reported to, Dr. Anne Sullivan, she was ahead of her time, and so in developing the care management program, it's where I got to understand and speak to over 1,000 patients from all ethnicity, race and gender and socioeconomic status. And when I coupled that with my training at Harlem, it resulted in me developing programs and what I referred to as the bridge team. And the bridge team was to bridge the gap, regardless of what the circumstances, bridge the gap, irrespective of, again, who that individual, what are the circumstances, and which led me to develop what I call a sustainable health equity program that's still in operational till today.
Burpee: Thank you for that. Here at Movement is Life Summit, I know that the both of you will be participating in the workshop called 'Seeing clinicians through patients' eyes.' Many healthcare professionals go to school to learn how to practice medicine or provide clinical care, and they might not know too much about the importance of communication as a central piece of care they provide, as you were just explaining. Dr. Beverley, Janet, can you talk about why communication is so important?
Austin: Well, it's not just important, it's critical to be able to feel comfort with your clinician when you're talking as a patient. Oftentimes it's difficult when you first meet your clinician and trying to develop a rapport with them to speak candidly. And so we've learned through a lot of research that it the in helping to facilitate community where the patient feels they're heard is so important. And what is one of the things in my presentation I wanted to talk about is, is how, especially in the earlier days, you often left the doctor's appointment without getting the questions you had answered, or you left and you're in the ladies room crying because it's even you've had another loss in your life. It seemed like every time you went to to the doctor, something else was involved and you weren't going to get it back. You know, it was chronic and it was very difficult as a young person, and then as I even as I grew older, and that brought in the importance of having a strong support system. If you don't have that, it is very, very difficult. You feel lost and alone. And I think that's one of the most important things, and this conference is addressing that, that we just saw a presentation about having measurable goals. It was called SMART, and it was movement and having a group that got together regularly and and so you felt like you weren't alone, and you had someone that could talk to that was maybe experiencing the same things that you were.
Burpee: Mauvareen, yes, what were you hoping to drive home to participants and just end this discussion this afternoon about respectful and effective communications, which I know that you have this is your expertise.
Beverley: Yes, I think it's so important. I think what I would like to drive home is understanding that not just moving the dial from health disparity to health equity, but moving the dial from health disparity to sustainable health equity. So two years from now, we're not talking about the same conversation. And I think what I focus on in terms of patient-physician communication is understanding who the individual is, and if we don't start there, then it's not, it's going to fail. And I look at it from the perspective of, if your perception of me is not the reality, then my health is going to go south. But if the perception and the reality is the same, good, bad, happy or sad, then we have an opportunity to collaborate better with patients and families and physicians.
And I think one of the focus, I focus on is what nobody speaks about, terms of health disparity, negativity in the medical records. And it's been proven that the negativity in the medical records is geared towards particular Black patients, particularly Black men. And in a book that I've written, Nine Simple Solutions to Achieve Health Equity: A Guide for Healthcare Professionals and Patients, one of this simple solution is the 'why' question. You know, ask why, what do I mean by that? So if I'm in the hospital or the doctor's office, and I was asked, Did you take your medication, or did you follow direction? And I say no, and I've done presentations across the board of different systems, and I've asked, I've asked the attendees, how many people have heard the word noncompliant? Everybody raised their hands. How many people have heard nonadherent? Everybody raised their hands. But asked, How many times have you heard the associated 'Why' question? And maybe of 60 people in the audience, three people. So we don't know why John Brown didn't take the medication, but we're going to refill the same prescription that the patient didn't take, and then call him noncompliant, and now with the nicer word, nonadherent, whatever that means, and then recognizing that written, if those negative languages written in the medical records two or three times that patient is under the bus. Nobody cares about that person, because now it's your fault.
And so I look to really encourage health systems, medical schools, nursing schools, social workers, everybody, if you ask the question, ask the patient why. And if you have a moment, I'll give you an example of how the why questions saved this man's life. I was at Kings County Hospital, which is a large Black population of Caribbean and African American population. The Spanish population was interesting. Not from Puerto Rico, Miami, I mean Mexico. They were from Panama, and under colonial rule, the British send the English speaking Caribbean to Panama to build the canal. So they have English and Spanish names, and they look like me, Ronaldo, Austin, Antonio Martin, and English was their primary language. The top islands were Jamaica, Trinidad, Haiti and Guyana, and 95% of the cohorts of African Americans came from the Carolinas. And I'm trying to understand why is everybody from the Carolinas, you know, Virginia sort of down the street from us. How come we don't have anybody? And it's after emancipation proclamation, when blacks had their first representation in Congress, their community started to do better than the white communities. They built schools, churches, businesses. Over the course of time, the plantation owner property went south, and nobody, nobody was picking the cotton. And over the course of time, the Ku Klux Klan came in and burned the whole place down, and they came up the coastline to New York. And I think these are important to understand the the population that one serves. And so I just want to go and this population, they don't get asked the why question, no, yeah.
So example, 50, 60, year old, African American male recently diagnosed with congestive heart failure, returns two weeks later, heart failure decompensated due to noncompliance. When that person gets admitted to theupstairs in the unit, do you think anybody's going to care about that person? I don't care what hospital across the nation and my team had to ask, Why? Why? Because they said, if you don't ask, why, they used to call me Dr B. Dr B is going to bug out if you don't ask. Why? I said, Why can't you take the med? Why didn't you take your medication? I can't take the water pill, which is a diuretic that flushes fluid out the body so the heart could pump better, but it makes you pee a lot. Why can't you take the water pill? And I'm glad everybody's sitting down. He said, Because I drive the number seven train. So what is your shift? 11pm to 11am What do you do when you get home? I do some chores. I make breakfast, but if I'm going I take my medication, but if I'm going to my shift, I don't take the water pill. And I bought the same cardiologist and who was ignoring him, and that's why I think I'm optimistic that systems could change. Because he told him, okay, take the water pill when you get home, be aware it may wake you up during the day, but by the time you get to your shift, you'd have less of a reason to urinate, but to the degree that you do, we're going to give you a cubicle so you could use in a private space when the train stopped, and that was all because the why someone asked a question, why,
You know what the patient said? If I knew I had to choose between peeing and breathing, I would have chosen breathing. And just just the last thing on this point, expand the conversation without the why question. You know, he would have been readmitted multiple times. And then there's another negative word, frequent flyer. And so that means you're abusing the system, and if he were to pass it would be due to noncompliance. And so we saved this elderly Black man's life so he didn't have to choose between his job and his health.
Burpee: Janet, what do patients value most when it comes to interactions with their clinicians?
Austin: Well, when I worked at the National Institute of Arthritis, Muscuoloskeletal, Skin Diseases at NIH, we had an opportunity to bring in representatives from all over the U.S., from different cultures and talk about these types of things, and we learned that with regard to so much care that's being given, oftentimes the patient will actually just feel like the physician knows, so I'll just listen. And so we needed a better way to facilitate that conversation, so they have put in place in some areas, the having someone that translates, someone that also the information that we have, we make sure that it is not just translated we learned, but also trans-adapted. Because a patient, we can offend individuals very easily by just running something through a machine, you know, through the computer to translate it, it doesn't pick up the different nuances that a straight translation does. And so we really have worked on when I was there, trying to make sure our literature was available and understood by multicultural communities as well as underserved areas, because so many don't even have the opportunity to go see, as you know, a doctor, especially in Indian Country individuals, I know they have their own medical setup, but if they even have a hard time getting to some of the rural areas, and, of course, in the South and in other areas, this thing thing occurs to where they're not able to get in. So I think patients very much value feeling that they're being heard and that the physician cares.
Burpee: Thank you. Maureen, to segue a little bit and to connect the why with why many providers feel like they're pressured to get through patient load, in a productive manner, to listening to them and listening to their day and listening to all of their symptoms and the reasons why they're there, does a respectful conversation have to be time consuming to a visit to a physician in order to for it to be effective?
Beverley: I think from my experience with the heart failure readmission prevention program, and Medicare said, if you came back in 30 days, we would only pay for one admission, whereas prior to that, they would pay for 2, 4, 6, 8, and so if for no other reason, hospital systems across the nation had to have a system in place for financial reasons, if nothing else, to decrease the readmissions and what we were experiencing and what we understood and shared with the teams is that first it comes down to heightened human value. Because I know everybody talks about being respectful and this and that, but if you don't value me, you think respect is going to come into your mind or your brain. No, first is to start with the human value and so and so part of the communication was understanding who that individual is and what I refer to in, you know, some of my conversation is what I refer to as the look alike syndrome, you know. So what happened was, we seen a patient. Person was Indian, and the team said, Oh, where in India you from? And person got he was so upset. I'm not from India, I'm not from India. I'm Guyanese. I'm Caribbean, you know, and it made me to recognize what I call the look alike syndrome. And I said, Go tell a British person they're Irish and see how far you get. Go tell the Chinese they're Japanese. Go tell the Indian they're Pakistani. Go tell a Ghanaian that they're Nigerian. Go tell the Jamaican that they're Trinidad. And go tell the Puerto Rican they're from Mexico. And most important, go tell a New Yorker they're from New Jersey, and it's done.
And so the reason I bring this up is because we may be from the same geographic location and the same space, but if we don't understand the unique cultural differences, then the health outcomes for that individual we lumped together may change. So it required my team, you know, had to find out who is the individual. You know, who is the individual. And so once we found out, and we asked the question, so introduce yourself, we would say, Good morning. So tell me where you're from. Take the time, right? Take the time so but let me just say this about the time, and that time was very short, you know? Why? Why? Because, at the end of the day, and that's just part of the reason why we decreased readmission from 30% to 18.7 in just about two years. And the teams were excited. Nobody was burnt out. They were happy. They would come in and say, Oh, Dr. B, can you help us with John Brown, you know? And it was we never experienced anything about long wait time conversation, because once we saw they saw the result where I was able to train the staff to ask simple twisters. So, because you need to know who is the individual, don't assume who I am and and so one of the things that I think is important, I did, you know, surveys, the same surveys I did the patients, is the same surveys I asked the staff so that to see if we're on the same page, right?
Burpee: So here on the Health Disparities podcast, we've explored and I've heard concepts of cultural competence or cultural sensitivity in recent episodes that they've had. I welcome each of your thoughts on what does it mean to provide cultural competent care, especially when it comes to communications, as you just explained, Janet, part of your workshop here at the summit focuses on understanding challenges of intergenerational communications. Can you give us an example of what it looks like to bridge generational gaps?
Austin: Well, I found having been diagnosed at 16, that I as a patient, had to learn a lot as well, but the physician, it is incumbent upon them to be respectful of the individual, and to listen and to to take the time to maybe learn a little bit about the family, you know, and just just jot it down.
Burpee: Mauvareen just talked about, right?
Austin: That is just perfect. I was just fascinated listening to her. And I think that we are on the road to these things, if the clinicians in other cultures will take the time to learn and take the time with the patient, like you said, it might only add another five or 10 minutes. Oh, I wanted to say, my internal medicine doctor, I was having a really rough time, I don't know if, just a few months ago. And of course, I'm there to talk with her, and I'm crying. And because she's listening and taking she actually said, Janet, I'm going to go ahead and book you to come back to see me in three months, I'm just going to make time for me to listen. And I just I left so optimistic because someone said that they wanted to listen.
Burpee: Yes, yes. So Mauvareen, why is patient self advocacy particularly important, and what can providers do to empower patients to more actively engage in their care?
Beverley: Okay, so I just want to add to what the conversation about cultural competence and what you said was so, so important, and it's, you know, we're on the same page, definitely, you know. And I think from cultural competence, cultural competence, to me, is understanding, obviously, the patient's culture, and to understand what important in that culture, and understand it and put it into play when you were discussing with the patient and cultural competence, to me, has to apply to American born physicians to foreign born patients, but also foreign born physicians to American born patients and American born physicians to American born patients who are different than themselves, because if we don't have those three different criteria come together, we will not be able to to look at in from a cultural perspective and the notion that patients from other societies, you know, we have to understand that, that I say you do, as if to say, the doctors knows everything, and I don't need to say anything. And I think we need to understand the role of culture in different environments, and don't assume. And I just give you, you know, and I also want to recognize that the African American elderly population is not a part of the cultural competence conversation. So when a patient said, I pick cotton in the south and I paid my dues, I don't deserve to be treated this way. Who understands that? Or wanted to see a patient in the morning, nine o'clock. And again, I said, Where are you from, South Carolina? And before I could say, I'm thinking from a medical perspective, are you visiting New York and you got sick, or do you live here? Because the transition of care would be different? And before I could even raise that, she said, my parents were a step away from slavery, and my grandparents were slaves. Was I expecting that Monday morning, nine o'clock, you know? And I just shortened the story, but I said, Tell me about it. And some of them spoke in codes. My family picked cotton on a plantation that was not ours, and then I had to get up at the crack of dawn and pick 300 to 500 pounds of cotton, and that was the same amount of cotton that was in that movie. 12 Years a Slave, really. And then I had to walk 10 miles to a segregated school. I'm saying 10 miles. We can't even go five blocks without calling the Uber, you know. And I'm saying, how do you walk 10 miles? And her body language changed, and the tone she said, Well, if you want an education, you had to like, what part of this don't you get, stupid? And I said, did you have to walk back? She said, No, the principal in the horse drawn carriage took us back, and we had to get back before dark, before the Ku Klux Klan. I said, How old were you? 10 years old? Could you imagine? No. And she went to Voorhees College. Is a two year black college in South Carolina, and this is now, she was 80. This is now 60 years later. Guess what her next response was? She was still upset with herself. I didn't get in 'till my second try.
Burpee: So many people, we all have our life experience.
Beverley: Yeah. And I just want to say this, she came to New York, became a dietitian, right? And I said, Do you mind me asking when did you retire? She said, 2000 I said, Do you mind me asking you how much you made? She said, $200 a week. But others made more. Read between the lines. And I think that's so important. And I made the reference, and I, you know, I said, when a Holocaust survivor comes in the hospital, we roll out the red carpet. The chief medical officer, the board of directors, the CEO, the rabbi, would go and see that patient. And so they should, because of the horrific circumstances that they endured. But when an elderly black person who fled the South because the Ku Klux Klan, lynching and Jim Crow, how come we don't roll out the red carpet? And it's an opportunity to recognize and treat all atrocities survivors the same, and to recognize the role of religion in these two populations were pivotal to their survival, exactly, you know. And it was a learning curve, you know. And just about that patient, I don't know if you ever heard of Stuyvesant High School, which is a is it outperforms private and public schools in New York. Wow. And her two children were two or five Black children to integrate Stuyvesant High School. So that's what I'm saying, the cultural competence we have to include this population,
Austin: And that so clearly illustrates the generational disparities.
Burpee: Is there anything else either one of you would like to add to our discussion today?
Beverley: I think what I would like to add is that we need to really get an understanding of health systems perception versus the reality. Because if the health systems don't understand what the perception is versus the reality, then the system is going to fail and they will continue to provide disparate care. And so, like I said, when I do surveys with patients and I do the same surveys with doctors, you know, I just said, Why don't patients take their medication? And all the doctors said, of course, they can't afford it. This is Brooklyn, you know, heart failure, taking five, six medications. Okay, sounds like it makes sense, right? What if I told you, when I asked the patients, why don't you take your medication, not one patient mentioned of course, and what was the answer? We don't take our medication because we think we're taking too many medications.
So if you're going to design a system based on cost, it's going to fail. So the solution was to bring the pharmacist in. We had an amazing pharmacist on the team who collaborated with the physician. Could we combine the antihypertensive and the diuretics? Does the 82-year-old still need to be on a statin, or the anti-inflammatory medications? And so I think that was a major contribution to our results. And the other thing that I would recommend to a system when you do discharge instructions, and I sat and I listened. And so the nurses say, well, take, you know, I'm just abbreviated, take the blue ones in the morning, the pink ones in the evening, the yellow and I said, Before you tell the patient what medications to take, and why don't you ask that person, how do you take your medications? And so maybe when you ask the patient, how do you take your medication? Then you could better understand and provide service. And the last thing I'm going to say is that what's not discussed at all is patient fears, and you demonstrated it and your own medical issues patient fears, so you could see how some of this fear could lead to noncompliance, and so we don't that's not something that's covered, which is kind of crazy, right?
Burpee: I'm glad you mentioned it.
Austin: Well, and the other issue, which I'm sure you could verbalize much better than me, is that, as the chronic disease patient gets older and older, especially when they have inflammatory disease, I have five specialists now that I have to see I've had the heart attack, I have diabetes, I have osteoporosis. And so when you're vulnerable and you go into a hospital setting and you're faced with all these doctors coming, it is impossible to have clear faults, to integrate what this doctor said and what that doctor said. And at one time, my doctor of Internal Medicine said that she had, she was able to be what she called the quarterback and do that. Well, I think doctors are just having so much demands on their time that that to be able to do all that unless you make an appointment, is difficult, unless you actually bring it to their attention and ask so that's where I think that to have a family member to go to the appointments with you, if at all possible, and to get a notebook and start putting stuff in it, because and document every call that you make to the doctor's office. Just write a little note. All of that is just so important as the general as you move through your lifespan, and then when you get to the older what can we remove? That's what my mother said. I want one pill. I don't know that we can get there, mom, but we work toward it.
Burpee: It's interesting. You talked about fear. We talked about fear for a minute. I always didn't understand why. When I went to the doctor, my pressure would go up. Normally, my pressure doesn't go up. I had white coat syndrome. I had the fear of, I don't know whether it was seeing a physician or what they were going to tell me that I had or didn't have, but I always got white coat syndrome. And I believe you're absolutely right, Mauvareen, there are very little discussions about fear when it comes to the medical industry. But before, before I, I'm sorry, did you want to add something?
Beverley: Just an example, if you have time for the fear factor and how it came in. And this is what I'm talking about in my book. These 'stop in my tracks' moments that led to boots on the ground. Simple solution. So there was a patient in a dialysis patient, and for every time he goes to the doctor ambulatory care, the doctor had a patient, refused dialysis, refused dialysis, refused dialysis, and so he was finally admitted, and you know, his kidney functions were worsening, and I said, did anybody talk to his wife? Does his wife come to visit? She comes every evening at five after work. So I waited to speak with her, and I said to her, I said, No, you love your husband, but you know, if you don't convince him to accept dialysis, he may not be here with you much longer. And she said, I don't think I want to do that, and I'm saying, what, and I had to compose myself, and again, practice what you preach. Tell me why.
And she said another powerful statement: I don't think I could live with myself. That's a powerful statement. Why? She said? Because our neighbor down the hall from us went on dialysis, and two weeks later he died. So who? How much of us would be rushing to put family members, but if you just and the same, that's why, again, I think there's change that can be done in the system. So I brought it to the attention of the nephrologist, and I said, you're going to have to convey that they need hand holding. And he met with them, and I was there. He said, I don't know why your neighbor passed. Could have had a stroke, could have had a heart attack, could have kidneys, could have failed. But one thing I will tell you, if you agree to dialysis, I will be there with you for the first week. How many nephrologists do you know that go to dialysis, you know? And again, it's when I realized the fear factor. And I think one of the things I actually developed, and copyrighted the SPOT methodology, S for doctors, S, speak to patients and families. P, pacify fears. O, outline what's important to the individual, not what you think is important to me. Hear what I say is important to me. And T, take you know, recognize that the time it may take for somebody to accept the disease, you know, and don't be judgmental if the person don't show up for the first visit, you know? And so that's the SPOT methodology.
Burpee: I'd like to thank my guests, Dr. Mauvareen Beverley and Dr. Janet Austin, for being with us today. I've really learned a lot of information from these talks, and thank you so very much for sharing. You can find links to more information about the work that our guests do at the links of our next show meeting. That brings us to the end of another episode of Health Disparities podcast from Movement Is Life. I'm Conchita Burpee, until next time, be safe, be well. Thank you so very much.