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In prior podcasts we talked about racism and COVID, lack of diversity in the palliative care workforce, racial and ethnic differences in end of life care, and implicit bias in geriatrics and palliative care. Today our focus is on structural, institutional, and interpersonal racism, and how these different but related constructs negatively impact the care of older adults and people with serious illness.  

We are joined by Deborah Ejem, a medical sociologist and Assistant Professor in the School of Nursing at the University of Alabama Birmingham, and Deep Ashana, a pulmonary critical care physician and Assistant Professor of Medicine at Duke University.  We discuss:

  • What are the differences between structural, institutional, and interpersonal racism?
  • Examples of how these forms of racism operate in the care of seriously ill patients, including from one of our guest’s personal experiences.
  • The importance of attention to religion and spirituality 
  • Clinician reluctance to engage in advance care planning with minoritized patients as a driver of disparities
  • How abandoning support for advance care planning might foreground implicit biases inherent in the heuristics (or nudges, or short cuts in thinking) inherent to time-pressed in-the-moment decision making.
  • Lack of diversity in the participants represented in AAHPM State of the Science presentations, as well as lack of focus on disparities (no link – see upcoming presentation by Deboarh Ejem at the virtual conference).
  • Co-opting of disparities issues by the Alzheimer’s Association in their argument for CMS/Medicare coverage of aducanumab (see this Twitter thread by Jonathan Jackson here and article by Daniel George here).  Action Item: Please submit a comment to CMS about aducanumab coverage today.  Feel free to express your outrage at the lack of diversity in the trials.

We could have continued talking with our guests for hours.  We will continue to address the issue of racism in future podcasts.


Eric: Welcome to the GeriPal podcast. This is Eric Widera.

Alex: This is Alex Smith.

Eric: And Alex, who do we have with us today?

Alex: Today, we are delighted to welcome some true rising stars, up and comers in the geriatric palliative care research world. First, I want to introduce Deborah Ejem, who is assistant professor in the School of Nursing at the University of Alabama at Birmingham, and a trained medical sociologist. Welcome to the GeriPal podcast, Deborah.

Deborah: Thank you. Thank you so much for having me.

Alex: And we’re delighted to welcome Deep Ashana, who is assistant professor of medicine at Duke University and is a pulmonologist and intensivist by training. Welcome to the GeriPal podcast, Deep.

Deep: Thanks so much. I’m glad to be here.

Eric: We’re going to be talking about structural racism in geriatrics and palliative care, but before we go into that topic, somebody has a song request for Alex. Who has the song request?

Deborah: I do. I do.

Eric: Deborah, what’s the song?

Deborah: It is O-o-h Child by The Five Stairsteps.

Alex: And why this song, Deborah?

Deborah: Well, I think it’s appropriate for the time now as an uplifting song, but I have to be honest with you, when I had to think about a song request, I just so happened to be watching The Simpsons with my children, and the song came on. [laughter]

Alex: Which episode of the Simpsons was it?

Deborah: Well, it was a good song. It was an episode where somebody wrote the word faith on the tree in a backyard and it renewed his hope in mankind, so it was a good episode, one of the better episodes, but I’ll be honest.

Eric: That’s great.

Eric: I love it. That’s a first. Great, first for GeriPal, from The Simpsons. Thank you, Deborah, great choice.

Alex: (singing).

Alex: Nice choice, Deborah. Thank you.

Deborah: Someday.

Alex: Someday. Yeah, it’s been tough with COVID. How are the COVID things, happenings, in your areas of the world? How are they in North Carolina, Deep? I think you came off service recently?

Deep: I did. I was in the ICU and we had the post holiday surge to contend with, so it was pretty busy and I think the unique thing now is also that there’s just tremendous staff shortages, so we had to, for example, the VIN in Durham closed an entire ICU because there were so few nurses in the hospital.

Alex: Wow.

Deep: It’s just so far into the pandemic. So many people are still getting sick and now healthcare workers are sick in such large numbers too, so it’s challenging.

Alex: Yeah, and how about in Alabama, Deborah?

Deborah: The same is happening here. We’re having a lot of staff shortages. It’s especially close to me in that my mom is an ICU nurse and has been for 31 years. My sister’s a pulmonology fellow, and so, although I’m not a nurse, I hear the stories of just how difficult staffing is and how short they are and how exhausted they feel, so my heart really goes out to all of you all for taking care of us.

Eric: Well, I want to thank both of you being on this call, despite being in the surge right now, and we’re going to be talking about structural racism in geriatrics and palliative care, and I’m wondering, before we go into this topic, can we take a step back and just help define what do we mean when we say structural racism?

Deep: Yeah, so I think that term has been used a lot recently, so that’s a good question that’s worth pausing to really define what we’re talking about. So I think racism is ever present in our society. It’s ubiquitous and it acts through different channels, and so the structural piece of it is just one of the channels through which racism acts. Traditionally, people will say that there’s structural racism, institutional racism, interpersonal racism. So those are the different levels through which it operates, and so structural, some examples of that that people might be familiar with would be the structures of society, so things like gerrymandering or redlining, so structural bias and housing and politics and voting and things like that, and is relevant to what we’re talking about, I think.

Deep: Some examples of that would be geographic distribution of high quality hospices, for example, so that would be one example of structural racism as relevant to geriatric and palliative medicine. Institutional racism is racism that operates at the level of institution, so health systems, in the example, and then interpersonal would be between people, so between physicians or other types of clinicians and patients in the families, for example.

Alex: So, this podcast style is actually not structural racism in geriatric healthcare, it’s structural and institutional racism in geriatric health care, is that right? Because we’re going to be talking about-

Deep: And maybe even interpersonal, yeah.

Deep: And I would say that when I think about these types of the different levels through which racism operates, sometimes actually I focus more on the latter too, because those seem more within my control to modify. It’s more within my control definitely to modify the interpersonal aspects of racism and maybe even the institutional aspects through things that I can do at the level of my hospital and community.

Eric: But as a researcher?

Deep: Yeah, as a researcher perhaps there’s more levels of influence that we can exert, so I think all of those are worth considering for sure.

Eric: Deborah, anything you’d add?

Deborah: Yeah, so as Deep was saying, institutional racism is more focused on the institutional level. It’s actually the policy and practices of an institution, whether it’s intentional or not, that favors one group and disadvantages another group, and oftentimes we see privilege associated with whiteness and disadvantages associated with color, and so we see this in research, not only just palliative care research, but across the board, in what’s being reported, even how the sample is recruited. Oftentimes, we see that landmark research for which policies are created from are not really representative of the US population, and that’s an issue. So these are things that we need to work on to fix, one study at a time, one project at a time. I think that things can get better.

Eric: Deborah, how did you get interested in this as an academic focus for your career?

Deborah: Well, my life drives… My personal experience drives my research interest. Growing up in the south in a lower middle class family, you got to see a lot of things, and like I said, my mom has been a nurse for 30 years, and so we’ve always want… I wanted to be a doctor, but that’s another story for another day of why I’m not. So, just hearing the stories that my mom would tell about her patients, she worked at a hospital here in Birmingham that served under-resourced individuals, mostly African-American, and I got so interested in the communication aspect of it.

Deborah: There’s one story that I always tell where she had an African-American patient, she was in the room with an African-American patient, and the clinician was in the room, and the clinician was talking about prognosis and diagnosis with the patient, and the patient just shook their head in the affirmative the whole time, with all the big words coming out. I think the doctor or the clinician thought that they aced it. They walked out and said, “He completely understood everything I said.” The patient beckons my mom to come back and said, “Nurse, can you explain everything he said? I don’t get a word. I didn’t get a word of what he said.” And so, you just see this a lot with her working in the ICU, those goals of discussion, goals of care discussions are always difficult. She’s often having to talk about what does resuscitation really look like? What does CPR really look like on a frail 90-year-old body? When you say that you want resuscitation, do you know what this means? Do you know how this…? Would this be a traumatic experience for you?

Deborah: Either way, it’s your choice, but those things, they have always had me interested. In 2020, I had my own experience with serious illness. For almost 45 days, I was in the hospital, in the ICU on ECMO and ventilator, and I, myself, witnessed communication issues, even being educated and being in the hospital, all that really didn’t matter when you were so sick. My mom and sister, being medically trained, it still was a different ballgame, having me so sick in the hospital. I got admitted in April. That was maybe three weeks into the pandemic, and no one was allowed to come and see me. So just imagine the communication issues that my family had to deal with over the phone, the decision whether to get me a trach or to do this procedure or to do that procedure was really difficult for them to make, even though they knew, okay, if I don’t get this done, she might not make it.

Deborah: And so, that made me think of, okay, I’m really lucky to have my family and my great colleagues, who are here, medically trained, that can speak up on my behalf, but what about those who cannot? Who don’t understand and don’t have anyone in their family who understands? How are they making decisions? How are they feeling assured that they’re getting the best care? So, coming from that, I had a spiritual, I guess, and physical awakening, that this work really needs to be done, because it was hard for me here, and I think I know a few things, and there are people that just don’t get it at all, and do they even make it out? Do they even make the right decision? Do they know the questions to ask?

Deborah: There were times when my family would question certain procedures, because of the medical knowledge they had, and they were right, and who’s there to advocate for people, who are in a similar situation, of color or not as educated and you just don’t understand the medical lingo? I feel like sometimes we’re talking two languages, between the patients and caregivers. So, that’s how I got interested in this area.

Alex: Yeah, thank you for sharing that story. I completely agree. There’s so much hidden that we don’t see, both in terms of the story of your mom and patient asking her, “I didn’t get anything of what this doctor just said.” I’m sure that happens all too frequently, and so many patients who don’t have the family resources and advocates that you had fortunately who I worry about and we just don’t know about.

Eric: Yeah, I’m wondering if they’re, having gone through that, was there one thing that either surprised or angered you the most about that experience?

Deborah: Yes, like I said, my education didn’t matter. So being trached, on a ventilator, no one knew who I was, so for better or worse, and one situation in particular I think about, is when I was on trach collar at the time and so I would get these breathing treatments. One of them, I can’t remember, but it was a normally addictive medication to numb the trach. Deep, you may be able to help me out, one of the breathing treatments they give you to help you to be able to handle a trach collar, and I think maybe it had Dilaudi or something like that in it, but I was coming off of it. So the respiratory therapist at night told me, “So you don’t have it scheduled for every six hours anymore, so if you need it, you need to ask for it.”

Deborah: In my foggy state, I thought he meant keep up with it yourself every six hours. Not getting that. “Okay, if you’re not short of breath, if you’re fine, don’t ask for it.” So, in the morning, another respiratory therapist who was white comes in and I said, “Oh, the guy told me to ask for that breathing treatment that I need. He said, ‘Ask for it every six hours.'” I’m just not thinking of… That’s just my mind, and she looks at me, and then she turns and walks away, doesn’t even acknowledge me, and my mom was in the room, and I was like, “See, this is why people hate the hospital. This is why people hate the hosp…” Because she didn’t even tell me… She just rolled her eyes and walked out, like does she think I’m going to try to get high on a breathing treatment? And I remember starting to get really upset and almost in tears, and I’m like, “Can I go home? Can you find a way for me to go home? I don’t want to be here.”

Deborah: I didn’t want to be here in the first place, and I’m definitely not here to abuse any medications, and so my mom had to explain to me, “Oh, I saw what she did, but it’s okay. The reason you can’t get it is because you’re not short of breath.” I was like, “That’s all she had to say.” I didn’t get that, and so I just think about people who had those negative experiences and just refuse to go back or refuse to do what they were told, or adhere to medical advice, because they’ve had such a bad experience. You lose trust. You’re just like I’m on my own.

Deborah: That’s how I feel, and so, I just feel like when you meet a patient, think about what was their backstory, what might they have experience for, what their family members have experienced, have had a negative experience with clinicians, and therefore, you’re thinking they’re just difficult, when they have really serious trust issues that have never been addressed or never even meant nothing. To this day, I don’t even think that she probably thought about what she did really hurt my feelings. Two years later, I still think about it. I can still see-

Eric: It also reminds me of the Health Affairs article that just came out yesterday about in the EHR, black patients had a 2.5 odds greater of having a negative descriptor in their chart, like being resistant or non-compliant, and just imagining, what did that respiratory therapist put in the chart and how much of that has to do with what we’re talking about today, institutional and structural racism or interpersonal?

Deep: And I wonder also how emblematic this is of other people’s experiences, so I think what you’re talking about is the assumptions that clinicians are making about patients without knowing anything about them, simply based on the color of their skin, and then the other thing that stuck out to me, Deborah, about what you said is the word advocacy. Families advocate for patients, but how clinicians perceive that is very different also, based on the race of the family or the patient. So in some cases, we say people are being difficult, they’re being pushy, when what they’re trying to do is advocating, and in your case, that’s so clear and that’s been clearly demonstrated in the literature that there are these very different assumptions made about patients and families, and then also, when they do their best to advocate for their loved one, that’s perceived so differently by clinicians too. They get [crosstalk 00:18:49].

Eric: You actually wrote a paper on this, didn’t you, Deep?

Alex: Yeah, with a terrific title, I should add. Don’t Talk to Them about Goals of Care, that’s in quotes, Understanding Disparities in Advanced Care Planning. This was in The Journals of Gerontology Medical Sciences. Could you tell us about that research?

Deep: Sure, so this was a qualitative study of about 70 clinicians at six health systems across the country, and we simply asked them about their approach to advanced care planning and then, in a unbiased way, just asked are there specific patient populations with whom you have difficulty discussing advanced care planning? And the vast majority of clinicians identified black patients as one of the groups with whom they had difficulty discussing ACP, and then we explored what are the reasons for that? And a couple of the things that came up were exactly where we were talking about, that there were a lot of assumptions that black patients don’t want to talk about this, black patients will have preferences for receiving really aggressive care, so what’s the point in talking to them about this? Those were two of the main findings.

Deep: And then the other interesting finding was just the way that we do shared decision making and advanced care planning, specifically in this country, it’s a specific decision making, right? Because we identify the one decision maker who would speak to you if you can’t, but that is not culturally relevant for all patients and families. Sometimes they want to identify one people. It also assumes that people think they have agency in determining their future, that it’s okay to talk about what you want your future to look like, but in some religious traditions, that may not be aligned with what people feel comfortable doing. So there was also this concept of the way that we conceptualize ACP may not really fit for all patients and families, and then, there were a couple of other things that spoke to institutional racism, so a lot of people spoke about how our advanced directive forms are only available in English. It’s really hard to get them in other languages, which, of course, will create structural barriers to ACP for many patients and families too.

Alex: You raise this issue of… You both have mentioned this issue of trust, and I want to just delve into that a little bit more and dig deeper into that, because we see this often in charts, and as somebody who gets consults, family’s very distrustful, patient mistrust. I wonder if we could unpack that a little bit more, and I know you both thought about this in deeper levels. Is it fair to label, in quotes, patients as mistrustful or having trust issues?

Deep: I know my personal bias is that I think this actually highlights a larger point. It’s about language and how we use language. So the flip side, of course, of trust is trustworthiness, right? Why should they trust us? What have we done to demonstrate that we are trustworthy? And so, a lot of the language and disparities, research, I think historically has been about mistrust and low health literacy, but what about the flip side of it? What about trustworthiness? What about how are we communicating? Is that done?

Deep: As you were saying, Deborah, is that done in a way that recognizes that the vast majority of patients actually have a very low health literacy, because they’re not experienced in the healthcare system like we are? So I think it’s much more powerful to frame things in the other way, which is where’s the onus of change? It should lie with us to demonstrate that we’re trustworthy, to demonstrate that we can communicate in effective ways, so that would be my response to that, is I think, to the extent that there is mistrust, it’s very justified, and the responsibility for changing that lies with clinicians and health systems, not patients.

Alex: Deborah, your thoughts on this issue?

Deborah: Yes, I wholeheartedly agree with what Deep said, in that I think that we, when you put those terms mistrust, distrust, you’re blaming the victim. We’re not delving into where does this mistrust come from? Oftentimes, we see that in research, as reasons for disparity or a lack of African-American participation in clinical trials. It’s mistrust, but no one ever goes past that. Why is there this mistrust? So, this is really an issue, and the communication aspect is, like I said, it’s really key. How can you trust somebody that you don’t really understand what they’re saying and how do you know that they have your best interests at heart? It brings to mind a study that I completed on religious and spiritual communication in medical decision making among patients and family caregivers and clinicians, and so basically network.

Deborah: I did qualitative interviews with African-American patients and family caregivers with heart failure to ask about how they wanted religion and spirituality included in their treatment discussions and decisions. We come in with a bias, especially in the south, that a lot of patients and caregivers will be super religious. I did not really find that. I found really just a spectrum of religiosity. But one thing that came to mind, when I was here in deep speak, is one of the quotes that I had from my work, was that I feel like my clinician rushes to get to the next person. I feel like they don’t spend enough time with me. I know that everyone doesn’t believe in the same thing that I do, but I want to feel like this person cares about me. And so, that was a big thing that came up. I want to feel like this person cares about me.

Deborah: So that, in a personal relationship, that truly feeling like you’re concerned about this patient is really important. That needs to happen way before this person’s at the end of life. If I don’t really trust you with my treatments early in the disease trajectory, how can I trust you to tell me to be DNR, and essentially let go. That’s hard to do. So that’s why my work focuses on improving communication upstream with patients and family caregivers, and clinician, and to work on exercising those communication muscles and helping patients to be able to identify what’s important to them way before they hit the end of life, and to be able to speak with the clinician, to turn it from this patriarchal, that the clinician makes all the decisions.

Deborah: We do know clinicians know way more than their patients. We’re not asking clinicians to say, “You have 15 different treatment options. Pick one. The ball’s in your court.” That’s too much, but we want the clinician to know us enough to know that maybe these three may be an option, and what do you think about that? And, okay, does this align with your life goals? If you’re on this certain treatment and it won’t allow you to go to church, because it’s so intensive or you have to stay put or something like that, and going to church is really important to you, maybe we don’t do that. Maybe we pick something else. So building this relationship earlier.

Alex: I got to interject here because here we’ve mentioned moving upstream, advanced care planning, advanced directives.

Deep: Uh oh, we know where this is going.

Alex: You know where this is going, right? Sean Morrison, Diane Meyer, and I think Bob Arnold was the third author, wrote this piece in JAMA, which I sure you’ve seen. If you haven’t read it, everybody, all our listeners, please read it, saying what’s wrong with advanced care planning? And their argument is largely based around a critique of advanced directives, saying that the resilient studies, they don’t work. If that is the case, and I know that you… Please feel free to critique that assumption then, certainly, we can all agree that the rising tide of advanced care planning, advanced directives, has not lifted all boats equally, and that there’s been greater uptake among whites than people of color. Should we, however, be focusing our efforts, research dollars, clinical efforts, on bolstering advanced care planning among people of color, when there’s this concern that this is an ineffective intervention in the first place? Thoughts about that? Maybe we’ll go to Deep first?

Deep: I’m going to sidestep that issue and say-

Alex: Probably a good move.

Deep: I think the unintended consequence of only focusing on this in the moment decision making could be that when… So we know a lot about when our racial biases and stereotypes are most activated. It’s like this concept of thinking fast and slow. When we’re in time pressured situations, we’re making quick decisions, for example, in the ICU, that is when we rely on heuristics and stereotypes the most, and so, my big concern with that, as relevant to health equity, is just that if we switch entirely to this model of in the moment decision making, I think there’s huge potential to actually even further widen disparities, because undoubtedly clinicians will rely more on these mental models that are imbued with the attitudes of a racist society. I think that will worsen care for minoritized communities.

Deep: And I think the other piece of it is, we were just talking about demonstrating trustworthiness and stuff like that, and I think that’s much harder to do when you’ve just met somebody and you’re making a decision, really in a crisis versus establishing that trustworthiness over time. So I think, from the perspective of a health equity researcher, I think there’s a lot of virtues to not abandoning ACP for those reasons.

Alex: Mm-hmm (affirmative), yeah. I like that response, Deep. Deborah, your thoughts.

Deborah: As the psych PI, the psych co-PI of an advanced care planning study going on right now, I would say we don’t need to abandon ACP studies. I am the psych co-PI of a study headed up by Kim Johnson, a really brilliant geriatrician at Duke University, a mentor of mine and Deep’s, but in that study, we’re looking at bringing equity to advanced care planning and completing advanced directors among African-Americans, looking at two different models, looking at five wishes and a model called respecting choices, and I found that work to be really valuable.

Deborah: Again, these people that we are recruiting are not facing immediate death. However, this study started pre-COVID. Now that we are in COVID, we’ve seen an uptick of people who were once well passing on us. So I think that the study is important in that area. However, I do think that upstream is really important, as I was talking about earlier, just presenting this idea of advanced directive and advanced care planning. When you’re stressed, end of life is really difficult. Me, myself, I’ve been in the hospital a couple of times. One time for a pulmonary embolism, and I was asked if I wanted to see the chaplain, and me, knowing what I know, being a palliative care researcher, wonder what my answer was. I was like, heck no. I do not want to see a chaplain. I do not want to do anything. So I just don’t think that that’s the right time to introduce the concept. I think that we need to have equal funding spread across the board.

Eric: So we’re actually going to be doing a podcast, coming up soon I think, Alex, on advanced care planning, serious illness communication, the differences between the two, and I think it’s fascinating. Is it just a name change? I was talking about changing palliative care. I’m wondering if we can switch subjects just a little bit and maybe do it, since we have 10 minutes left, do a little bit more of a discussion about particular topics in geriatrics and palliative care around structural, institutional, organizational racism. One thing that I’m seeing a little bit more of lately on Twitter is that organizations… I’m going to switch to now geriatric. So if you’ve listened to this podcast, you know my thoughts on aducanumab, as well as Alex’s, but when organizations tend not to get their way, what I’m seeing lately is there’s automatically a quick jump to, oh, I really care about diversity, equity, inclusion, so I’m going to make a case that this is discriminatory because it’s going to have differential, disproportionate impact on blacks and Hispanics. Literally word for word almost from what the Alzheimer’s Association said when CMS came out with their draft ruling.

Eric: I loved another tweet by Jonathan Jackson, who I still hope I can get on a podcast sometime soon, noting that, he basically said, “Whoa, whoa, this is yet another example of an organization invoking systemic harm when it’s convenient, not when it’s appropriate. Let’s chat, shall we?” And he goes to this brilliant Twitter thread, not to just single out Alzheimer’s Association, because I feel like I’m seeing a lot more of this, Alzheimer’s Association, Harry Johns, white, rich CEO, all of a sudden cares about diversity, equity, inclusion. Is that allyship? Is that taking advantage of? Exploitation of? How should I think about this?

Deborah: As a minority researcher who does minority health disparities research, it’s a bit difficult for me in this time, because we’re really seeing the disadvantage switch to obtaining grant and research dollars. This is something that I’ve cared about for so long, and in times past, has been very difficult to get projects on minority health disparities funded, as you can see in just the amount of research you see out there on minority health disparities. It’s not easy, and while I think it’s great that we have so much attention on minority health disparities, especially in light of COVID, it’s difficult. I’ll just put it. It’s difficult for me. Now that everybody’s on the bandwagon, you still see these disparities. Those people are more likely to get the grant dollars than I would be as a new minority, relatively new minority healthcare or care researcher, and so I just wonder about the intentions. Is this something that you really care about or just a means to an end, a means to getting the grant dollars? And so it’s really difficult.

Deep: Yeah, and Eric, I would also… I agree with you, Deborah, and I would also add to that. I think that the way that you described it at least, it does not seem like true allyship to me, not knowing as much about the situation as you do, and I think what I look for is that you can’t just say that you care about it. There have to be tangible actions tied to it. So then, what tangible actions are there going to be to make the drug available to people who are underinsured or uninsured? So, make the drug more readily accessible to minoritized communities, because this sort of thing, as you were saying, Deborah, is happening in research. This term has been coined now, this equity tourism, that people are doing disparities research because it’s fundable and highly publishable. But when you look at the teams of researchers, they’re not really representative of patient populations in the communities that they’re studying. There’s no understanding of critical race theory and things like that. So I think the words themselves have to be coupled with representation and then true commitment in the form of policies in this example.

Eric: And I think one of the criticisms, like with aducanumab, and I’d love to talk about organizational and instructional racism with research, is that the aducanumab trial had, I think, six African-Americans in their high dose group, so nobody really cared about that, that there were no minorities or people of color in the trials. They only cared about it once CMS decided that they may not pay for it, and there’s a lot of discussion about, oh, it’s just so hard to do these trials with and include people of color because of real structural reasons, but also, because most of these memory centers where these trials are done often have a very white population. What are your thoughts about the organizational and structural barriers to increased participation of people of color or other-?

Alex: Of course, a selection of articles, Deborah, maybe starting with you, you have an abstract coming out. I think this is for the State of the Science AAHPM?

Deborah: Yes.

Alex: Coming up next month, which will be virtual, and you reviewed articles presented at the State of the Science Plenary for years and looked to see what sort of inclusion was represented in those and focus on disparities. Could you tell us a little bit about that work?

Deborah: Yes, so this work was led by Dr. Ramona Rhodes 00:38:13], and the senior author, again, was Dr. Kim Johnson, and so what we did, we reviewed articles presented at the State of the Science from the years 2004 to 2019, so about 15 years. We found that we had 127 articles meet the criteria, and out of 127 articles, can you guess how many had a health disparities focus? Three. Only three had a health disparities focus.

Alex: Wow.

Deborah: And so this is a systematic problem with our research, and it goes back to what we recommend, is that there need to be more inclusive standards in how we are selecting populations. A lot of the research that we reviewed was mostly white. One state, it had 98% white participants. Oftentimes, when their race is described, it’s just white or non-white, non-specific terms, which is an issue. So there’s a lot of work to be done.

Deborah: So the standard of practice of recruitment and analysis needs to be more inclusive. Right now, it centers and focuses on whiteness as the standard, as the comparative, and then everything is compared to it. Again, I feel like we’re blaming the victim when we say we just can’t recruit African-Americans. In the study that I’m in, that I’m this site co-PI, equal ACP, Dr. Johnson, again, is the PI, we have successfully recruited more African-Americans than whites. We are close to 600 participants, and I think we have 100 more black participants than whites in a large trial, so it can be done. But we are intentional with our recruitment strategies, with the way in which we reach individuals. We also need to think about community based recruitment strategies, going out and meeting people where they are as opposed to being in clinic in mostly urban or suburban areas. So there are things that we can do as research and is our responsibility when we’re getting the money, we’re getting the research dollars to do this, to go out and make equitable samples and inclusive samples.

Eric: Deep, any other thoughts on that?

Deep: No, I was thinking of EQUAL ACP too as a great success story. So I think there’s a lot that we can learn from that trial, other than the results of and what you find with the ACP intervention. I think that’s going to be a trial that we’ll learn from for years to come, with regards to this issue of unequal recruitment.

Eric: I’m also wondering, and I know we’re running out of time, I just love to hear from you, really focused on either the geriatrics or palliative care, this is the magic wand question. If there’s one thing that we could do moving forward, either more of or differently, what would you want the fields to do? Deep, I’m going to turn to you first.

Deep: You mean from a research perspective?

Alex: Any, you can choose any.

Eric: Any perspective.

Alex: It could be policy.

Eric: It could be institutional, policy. Yeah, clinicians magically change their behavior and do something differently. It’s magic.

Deep: Yeah, total pie in the sky. Well, I would focus on… Yeah, I would say it would be the interpersonal piece of it for me. So, that’s what a lot of my recent work has been focused on. It’s the interpersonal racism and that has been known, dating back to the early 2000s, the Institute of Medicine Unequal Treatment Report had a huge summary on how clinicians don’t engage patients equitably in communication and shared decision making. So this has been known for over two decades, but these problems are super pervasive and that’s just a really hard nut to crack, because it’s about changing our stereotypes and behaviors.

Eric: Is there anything that changes that? Is this just a…? Besides changing what a doctor looks like and their background, is there anything else that we can do to change that pervasive behavior?

Deep: Yeah, absolutely. We’re hoping-

Eric: Or do we just need-? Yeah, go ahead.

Deep: No, no, there have been some interventions that have worked. So, some of the things, like we talked about, there are structural barriers, so making advanced directives available in different languages, things like that. There are low hanging fruit type of solutions, but then in terms of the behavioral solutions, there are interventions there too. So for example, if there’s some perspective taking interventions, where you intentionally step into the shoes of the person that you’re talking to and try to consider their perspective. So one of the studies that I’m leading now is about how we label patients and families as difficult, rather than trying to understand why are they angry? Why are they so defensive? Well, in the ICU, of course it’s because they’re in a terrible situation and their loved one is dying. So sometimes it’s just as simple as taking a moment to take that perspective and to prevent ourselves from othering people. So from classifying them into this category that’s different from ourselves. So there are simple interventions like that that have worked.

Eric: I love that. It reminds me of… God, what book was that again? Like taking a step back and just think why would a reasonable, rational and decent human being do this? And you realize, oh my God, there are tons of reasons, like their loved one’s dying. This is a shock. This is the first time they’re able to visit because of COVID. So many reasons…

Deep: Yeah, and I will end on a hopeful note, which is I think which specialty is best position to do this, other than palliative of care? The core of palliative care is talking to people and understanding where they come from, so if it’s going to start somewhere in medicine, I think that’s where it’s most likely to succeed. So, you guys are going to lead us in that.

Alex: Deborah, you’ve got the magic wand now.

Deborah: Yes, I would have to agree with Deep, but it’s more for personal reasons. The communication area is just so important to me. It has had a lasting effect on my life, not just the hospital stay that I recently had two years ago, but other experiences I’ve had, when I had my son and I was in graduate school, and so I had Medicaid, and the negative experience that I had with the nurse that time made me push off going to the hospital when I knew I was having breathing issues this time, and so when I landed in the hospital, three days later, I’m on the ventilator, and I don’t think anybody knows that that affected me in such a big way, so having clinicians take the time to communicate, to try to understand the patient, to, as you said, try to put yourself in that person’s shoes of what they may be going through at the moment, I think it’s really important.

Deborah: Now, I like to plug, here at UAB, we actually have a program where clinicians are trained on how to communicate bad news to people who don’t look like you, so it’s called the ACT training, A-C-T training program here, provided by our palliative and supportive care unit, and it’s just really great. I’ve gone through it. We have a chaplain who leads it, so they are really great at communicating with patients, and so using them as a resource is really important, but I think working on their interpersonal relationship with patients would be really, really impactful. It would make a world of difference. It seems small, but it really would. It really will.

Deborah: When you have your clinician ask you about you and not just about your condition and realize that you’re way more than that, it just makes you feel valued. It makes you feel like, maybe I want to try and now I respect my clinician. He, or she, said that if I do this, I’ll feel better. I don’t want to let them down. I don’t want to let my family down. So those things, I think, are really important to consider, and as Deep said, again, I think palliative care is well positioned to lead the charge on improving communication with patients and family caregivers in actually taking the steps to walk in their shoes and sympathize and empathize with this group of people that are going through so much.

Deep: So win, win too, right? It helps the patient and family, and hopefully, we feel better about our jobs too. We have better relationships with patients and families. So it’s mutually beneficial to everybody.

Eric: Well, Deep and Deborah, I want to thank you to be on this podcast, but before we end, Alex, you want to finish up a little bit?

Alex: A little more O-o-h Child. (singing)

Eric: Deep, Deborah, big thank you for being on the GeriPal podcast.

Deep: Thanks so much for having us.

Deborah: Thank you.

Eric: And thank you, ArchStone Foundation for your continued support, and to all of our listeners.

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