Race/ethnic differences in end-of-life care: Podcast with Rashmi Sharma and Zhi Jia

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 Rashmi Sharma, who is director of Equity, Diversity and Inclusion for the University of Washington Medicine Cambia Palliative Care Center of Excellence and assistant professor of general internal medicine there. Welcome to the GeriPal Podcast, Rashmi.

Rashmi: Thank you so much. Super excited to be here.

Alex: And we welcome Zhi Jia, who is a Canadian palliative care physician who is now a research fellow at Dana-Farber Cancer Institute in Boston, Massachusetts. Welcome to the GeriPal Podcast, Zhi.

Zhi: Thank you, Alex. It’s an absolute pleasure.

Eric: We’re going to be talking about race, ethnic differences and end-of-life care in particular, mechanical ventilation. But before we get into that topic and congratulations, both of you, on two journal articles where there was a JAGS paper and JGIM paper. The JAGS paper I think was a year old. JGIM paper just came out.

Eric: But before we get to that topic, we’re going to do a song request. Who has the song request for Alex?

Rashmi: I do. So we picked Beyonce’s Halo.

Alex: And why this song?

Rashmi: So, it’s such a great song and I think it’s full of so much love and joy and hope. And so it seems like a nice way to start what can be a conversation about a really heavy topic as we walk about something like racial inequities in care. So I think it’s a nice reminder that at the end of the day, we all have a right to experience love and a joyful life.

Alex: That’s great. Good choice. Oftentimes, people choose these songs because they want to torture me with a female diva song choice. But I think this actually works. We’ll see. Here we go.

Alex: (singing)

Rashmi: That was amazing, Alex. I think we should get credit for helping you channel your inner Beyonce.

Zhi: Wow. Alex, that really helped to just calm me right down. It’s a very unique perspective and cover on the song.

Alex: Thank you. I had a lot of fun with that. That was great song choice actually. Man, I was quite intimidated first.

Eric: You can always tell when Alex has fun with a song. He takes that intro part a little bit longer.

Eric: Well, let’s dive into the topic. Race and ethnic differences and end-of-life care, I’m going to first turn it over to Rashmi. We always like to start off each podcast talking about how you got interested in the subject. What motivated you?

Rashmi: Sorry, Eric. So I have two answers to that question. I think the first is as a daughter of Indian immigrants to the US, I’ve been thinking about issues related to race and culture and racism for as long as I can remember. And so as someone who identifies as an Asian-American woman, as a South Asian-American woman, that’s the lens through which I see the world and informs the kinds of questions I’m interested in and what gets me excited.

Rashmi: And then as I was reflecting about kind of why racial disparities in the context of palliative care, I was thinking about a story when I was an internal medicine resident that I think is kind of a pivotal moment in my career path, at least in this area. So if you’ll bear with me for a second while I talk about this story.

Rashmi: So as an internal medicine resident many years ago, I was rotating in the medical ICU. And in the middle of the night, I had admitted this elderly African-American woman with mesenteric ischemia. There were no surgical treatment interventions, and since it was the middle of the night, I spent most of that post call morning in conversations with the family, trying to figure out what’s important to the patient, what’s important to the family. And they had talked a lot about not wanting her to suffer.

Rashmi: And so the conversations were evolving and I had to leave the hospital by noon, so I left. I come back the next morning and in our ICU, we’d start rounds every morning reading chest x-rays. So the fellow puts up the patient’s chest x-ray and I’m just standing there looking at the chest x-ray and I don’t say anything. And the fellow was starting to get a little annoyed with me. She gave me another minute.

Rashmi: I’m just staring at the chest x-ray. And she says, kind of snaps, “There’s a Swan-Ganz catheter. You can see it’s placed correctly.” And I kind of blurted out, “I can see that, but I’m trying to figure out why it’s there.” And she didn’t appreciate that comment, I’ll say. She was definitely taken aback by that.

Rashmi: But for me, this question of why, why did this patient have this intervention that didn’t seem to be aligned with the values and goals that have been expressed by this family? And I felt frustrated, and honestly, a little demoralized. I felt like as a physician who has the knowledge and the skills and the tools to be able to intervene, I wasn’t able to prevent this patient from having this highly invasive procedure that was not helping to relieve her suffering.

Rashmi: And I was thinking, “As patients and families, we’re navigating these experiences often for the first time, almost like what chance do they have to advocate for their values and goals?” And so now as I look back on that moment, I think it was one of the reasons why I want to become a palliative care physician, and also why I wanted to answer these kind of why questions. Why do we see these patterns in care that we see particularly as we think about minority population?

Eric: Wow, that’s a really powerful story. And really as we get into the topic about the differences versus disparities, a lot of things are coming to my mind, so looking forward to talk more about that. But before we do that, I’d love to hear from Zhi kind of how you got into this topic.

Zhi: Well, Eric thanks for the question. And Rashmi, I just want to echo that experience. And thank you for sharing the story. It’s a really profoundly impactful story for me because I share a very similar immigrant story actually. My interest in trying to understand the Asian-American end-of-life journey really stemmed from both my personal experiences and caring for my father who passed away from metastatic neuroendocrine carcinoma back in 2007, And also my medical journey in learning about my own misconceptions and misperceptions towards palliative and end-of-life care.

Zhi: When my father was first diagnosed with the recurrence of his disease, our family were … I think we were just shell shocked. We had no idea what to do. We didn’t know what resources were available. This was in Canada, Calgary, Alberta. And we had no idea sort of the focal points or access points to gaining more support for our family through this journey.

Zhi: And so to ameliorate some of the suffering and the difficulties that my father went through, he actually had to bring my aunt over from China to serve as an international caregiver to navigate his personal needs towards the latter journey of his life. I guess the experience had a profound impact on me because although I was fluent in English, I had no idea who or where to turn to as our family was struggling.

Zhi: And it wasn’t until a homecare nurse recognized how distressed we were both financially, socially and medically that they made a referral to palliative care and my father had an immediate urgent admission to hospice. I think from the perspective of the family, there was a strong sense of abandonment from the medical system. Somehow we went from active care to a residential hospice.

Zhi: And as a result of these sort of conflicting ideas, I ended up just not visiting my dad. I just felt that stepping foot into a hospice, I felt like I was somehow contributing to this conspiracy that the healthcare system is asking my father to go away and to disappear quickly.

Zhi: And so fast forward about 10 years, I’m at the end of my family medicine rotation and I met and was lucky to have been mentored by home palliative care physicians showing me sort of what the best care we could offer our patients in this really vulnerable period of time. And I had this complete 180 in my own perception towards what palliative care can offer. And that launched me into clinical training in palliative care.

Zhi: But through my clinical fellowship here in Alberta, I kept on meeting Asian families whom we were consulted on for goals-of-care conversations, food-related distress, navigating family meetings and family-based decision-making surrounding end-of-life topics. And I felt that the same sense of misperception or the same misperceptions for palliative care, the mistrust towards the system was sort of coming back full circle.

Zhi: And that really helped direct me to recognize that perhaps our family’s journey wasn’t unique. And that launched me into this mode of really wanting to describe what the end-of-life journey has been for Asian-Americans over these last two decades. And has anything really changed? And if not, why is that and what can we do to help?

Eric: Great. Thank you both for sharing your stories too. I really want to get into kind of both of these stories and some of the research that you’ve done to help answer that question. I’m wondering if we can first turn to Rashmi to talk a little bit about her Journal American Geriatric Society paper, JAGS paper that she published in July of 2020 on the black and white differences in invasive mechanical ventilation in advanced dementia. Why did you do this study?

Rashmi: So, Eric, I think we were really interested in answering questions about what has changed as we look at use of invasive mechanical ventilation in the context of advanced dementia over these last couple of decades and if those changes have been different for black older adults with advanced dementia compared to white.

Rashmi: And there were a couple of reasons that I think we were interested in looking at those questions specifically. One is that I think over the last 20 years, we’ve made a lot of progress in how we think about palliative care and the integration of palliative care particularly in a hospital setting, communication skills training to help clinicians do a better job, navigating these goals-of-care conversations.

Rashmi: I think there’s also been a lot of work around advanced care planning, use of advanced directives including in the population with advanced dementia. So I think there have been a lot of these positive changes over time.

Eric: And you also noted in your paper that the use of other interventions for people with advanced dementia like feeding tubes have also decreased equally amongst white and black patients by half. Is that right?

Rashmi: Yeah. And that’s really, I think, one thing we looked at and kind of drove our desire to look at this other type of high-intensity intervention which we can talk a little bit more about invasive mechanical ventilation. But that’s exactly right.

Rashmi: So we have this kind of trend that we’re seeing with this other intervention where there’s plenty of evidence around how that’s not that beneficial. And as you point out, Eric, we see that trend both for whites and the blacks. And so that question of, are we seeing similar trends with invasive mechanical ventilation?

Rashmi: As we think about kind of the burdens and benefits of an intervention that can cause a lot of physical distress and psychological distress. Those were some of the reasons that we wanted to look at invasive mechanical ventilation specifically and because we were focusing on the population with advanced dementia where that may be particularly burdensome and very little benefit, the potential to intervene on that type of intervention, I think, is really important.

Rashmi: And so we decided then to look at sample of Medicare beneficiaries. We were looking at a time period of 2001 to 2014 to see then how these rates of what I’m going to call IMV so I don’t have to say invasive mechanical ventilation every time. What happened to those rates and then comparing kind of blacks and whites.

Eric: And how did you define advanced dementia? Where did you get that … So you’re looking at a hospitalized patient off from a nursing home. So, is the advanced dementia coming from MDS from the nursing home?

Rashmi: Yeah, that’s exactly right. And so that’s, I think, an important point about our study sample. So we were looking at patients who’ve been hospitalized for either pneumonia or septicemia over that period of time, 2001 to 2014. And we’re limited then to people who had had spent time in the nursing home so that we could use MDS data and then we use the cognitive performance score.

Rashmi: So we were looking at really those with most advanced disease with scores of five and six. It’s on a scale of six, so that’s the population with the most severe levels of dementia.

Eric: And then what did you find?

Rashmi: So this is the good stuff. I think they’re kind of two key pieces that I think are important to highlight. One is that we did find that rates for IMV were increasing over this period of time. And that’s actually consistent with literature both in the US as well as Canada and Europe.

Eric: And not by a little bit, right? For white patients, 4% to 12%. That’s a big jump over the course of what, the difference of a little over 10 years?

Rashmi: Yeah, that’s exactly right. And what was super striking, I would say, is that those were the rates for whites. And then we look at blacks and we see that that goes from almost 9% to 22%. So now we’re talking about more than one and five older African-American adults with advanced dementia who are having mechanical ventilation.

Rashmi: And I think the important kind of context for interpreting these what I would say are really large numbers is that this population had really high mortality rates. So we saw mortality rates in the 80s which means that the vast majority of these patients are not having that kind of benefit. Back to that point about us, we’re weighing the burdens or harms versus the benefits.

Rashmi: We’re seeing this intervention that is not conferring the benefit but is causing what I would say again is kind of the physical and psychological distress. And so I think that’s what’s super worrisome about these findings is seeing such high numbers of people that are undergoing this intervention that was not conferring mortality benefits.

Eric: So I got a question. So we’re seeing this difference, and I think … Actually, I had to go back to 2016. We actually did a podcast called Keep Your Hands to Yourself on another one of Joan Teno’s JAMA IM articles on seeing that the rise in mechanical ventilation on advanced dementia. Is this just a difference or is this a disparity? Is this something that … Is this preferences in care that they’re just different? Are there differences based on where they get admitted to, their hospital or geography? What do we know about that?

Rashmi: Yeah. So you get to our second key finding which is that we looked at whether we saw these same patterns, the same differences occurring within a specific hospital or across different hospitals. And we found the same finding in both of those situations, which means if you’re in Hospital A and a black patient and a white patient both go to Hospital A, we saw that the black patient was more likely to have IMV.

Rashmi: If you looked across hospitals, we saw the same pattern. And so I think that suggests that there is definitely an aspect, an explanation for part of these findings that’s about where people are getting care. And there’s definitely plenty of other data about geographical variations in care where we see that racial ethnic minorities. And again, most of the literature is focused on the African-American population where we see that patients are more likely to receive care from hospitals with poor quality care.

Rashmi: And so I think the message here is we’re seeing all of that. There are likely individual level factors that are going on that are explaining part of this. But there definitely is a component of kind of system level and I would say kind of policy level as well, influences on what’s driving these differences.

Rashmi: And just to come back to your really important point about preferences, I mean that’s kind of fundamental to this question of is this goal-concordant care, which the limitations of these kinds of datasets are that we don’t have data on these patients’ preferences. So then we kind of drawn, “Well, in a lot of other studies, in general, patients prefer to want to die at home,” for example.

Rashmi: But that is a challenge with some of these work is we don’t know whether or not this is goal-concordant care. But I would point again to that point about the high mortality rates because regardless, we are seeing care that is associated with kind of burden than benefit.

Eric: It also brings up another question. I’m going to turn over to Zhi, I’ve seen a lot of recent discussion about differences between blacks and whites, and I think Rashmi brought up, are we seeing similar differences in other populations? And I’m going now to your JGIM article on Asian-American Medicare beneficiaries and that use of invasive mechanical ventilation at the end-of-life.

Zhi: Wow, Eric, thank you for the question. As I’m listening to Rashmi talked, the hair on the back of my neck just stands up because there are so many similarities that’s shared between ethnic minority groups that I’m finding myself just wondering whose end-of-life narrative are we describing? And that is really sort of just something that’s popping into my mind, Eric.

Zhi: As I’m looking at our data with Asian-American Medicare decedents, we did see similar trends in the increase in the rate of IMV use from 2000 to 2017 for both white Medicare beneficiaries as well as Asian Medicare beneficiaries. I would say overall, Rashmi was talking about sort of how to conceptualize these numbers.

Zhi: I would say overall one in six white Medicare beneficiaries, if they were admitted to the hospital in the last 30 days of life, they may get invasive mechanical ventilation. And that goes up to one and four for Asian-Americans, if they were admitted to hospital in the last 30 days of life.

Zhi: And although we saw that the rate of IMV use increased for both populations over the last 17 years, what was really striking to me is when we look at the figure one, that line never converges. That difference is sustained and is persistent over these last 17 years. And the same, we did similar statistical analysis as Rashmi did in her study using different models to make sure that the relationship that we’re seeing is shared between Medicare beneficiary plans, for example, the Fee-for-Service Plan and the Medicare Advantage Plan.

Zhi: And we also did some sub-analysis for the reason why the patients were admitted to hospital in the first place. For example, cancer has a primary diagnosis as well as non-cancer diagnosis like pneumonia, sepsis, CHF, COPD, as well as dementia. And we saw that the same relationship persisted across this sub-analysis as well.

Zhi: And that both gave us confidence in our results but also raised alarm bells for us as to why is this relationship so persistent.

Eric: I got a question, I guess it goes to both of your articles, because for example your article, Zhi, these people got admitted to the hospital within 30 days of life. So, how much of that is also saying that maybe there is an underlying preference for more aggressive end-of-life care because they’re actually getting admitted to the hospital?

Eric: The same thing with Rashmi is it’s not just nursing home patients with dementia, it’s the nursing home patients with dementia who ended up in a hospital and then ended up on a ventilator. How should I be thinking about … Is that telling us something about preferences or is that just we know a lot of people in nursing homes or older adults end up in the hospital often based on where they live?

Zhi: Yes, Eric. That’s a really great question and it speaks to how we identify this population, and does looking at Medicare patients who were admitted in the last 30 days of life sort of bias our relationship towards the null or away from the null? And I would say that, first of all, Asian-American were more likely than white beneficiaries to be admitted to hospital in the last 30 days of life, and this is of in our exploratory analysis that we’ve done on the side. And secondly, I think looking at this patient population where we are looking at in-patients in the last 30 days of life would actually bias our relationship towards the null.

Zhi: So, I would say that in terms of generalized ability of the results that we can still draw the same inferences for those who are admitted. And at the same time, working with Joan and being able to garner her knowledge around the trends in hospital deaths for our Medicare population as a whole, we are seeing that more than half of our Medicare beneficiaries are dying in hospital or have admissions to hospital in the last month of life.

Zhi: So, I would say that although it is a limitation for how generalizable our data is, it nevertheless provides a really great snapshot of what our Asian-American patients are experiencing.

Eric: When I think of Joan’s work too, I just think while there are some things that show potentially end-of-life care as changing including less people may be dying in the hospital, I think from Joan’s work is, correct me if I’m wrong, there’s more churn. So, more people are being hospitalized at the end-of-life, maybe being admitted to hospice but higher in just the last three days of life, just a lot of things happening in those last 30 days that may or may not be consistent with high quality end-of-life care. Rashmi, you were going to say something?

Rashmi: Yeah. I was just going to make two points. First is I love the way that Zhi just talked about this question of end-of-life narratives because I think that so far the only narrative that we have sometimes heard about is the experience of the majority and that being normal. And I think the question of what is the “normal” experience for different minority groups and I think broadening the way in which we think about what should the end-of-life narrative look like is really important as we’re thinking about this research.

Rashmi: And then I think coming back to this question of preferences, I think it’s so complicated. I think we also have to think about the ways in which race, culture, inequity, structural racism inform the way preferences are constructed and the way those preferences are enacted. As we think about the clinical encounter communication, shared decision-making, the way in which we’re able to either do a good job or not do a good job … For example, when we let our implicit biases come into the picture in really eliciting what’s important to a patient and their family.

Rashmi: And then the ways in which we help walk patients and families through what treatment decisions align with those values and goals. There are points at each step of that process where inequities can creep in and affect both what it looks like people are saying their preferences are as well as when they have indicated their preferences the kind of care they get. So, I just feel like that’s another important element to this conversation as we think about what is the difference and what is the disparity.

Zhi: And if I might jump on that as well, Rashmi, I think as we’re thinking about preferences, I look at as part of when we came up with the study, we were thinking about what do we know already in terms of preferences for life-sustaining treatments and care at the end-of-life for Asian-Americans? So, we had a chance to look back at some of the prior studies on Japanese-Americans, Korean-Americans. And similarly, we had done sort of a community-based evaluation of advance care planning tool to look at the preferences of community-dwelling Chinese-Americans.

Zhi: And in that sample, we had 2,200 Chinese-American community-dwelling adults and the number one ranked, I guess, wish at the end-of-life is if I’m going to die anyway, don’t keep me alive on machines. And that was rated as one of the top three preferences for a quarter of these 222 community-dwelling adults.

Zhi: And I would say just as Rashmi mentioned, the results may be biased because they represent a portion of our constituents or population that are healthier than the ones that we look at in our studies. So, how do these preferences change over the course of an illness? When is the best time to capture them and how do we capture them sensitively is really important as we think about culturally tailored, advanced care planning interventions, goals-of-care conversations and navigating these conversations both in the moment of serious illness as well as before serious illness.

Alex: I have questions for each of you about this issue. First for Rashmi, thanks to the work of Joan Teno, senior author on both these papers, shout out to Joan Teno and the dog Bean. Thanks to the work of Joan Teno, Susan Mitchell, Tom Finucane, Muriel Gillick, others, rates of feeding tubes for people with advanced dementia have dropped as you noted. And they’ve dropped similarly for black and whites with blacks and whites with advanced dementia.

Alex: That success and whatever interventions have gone into that change has not translated into a decrease in ventilation. And I’m wondering why that is because you might assume that as part of the process of reducing feeding tube use for people with advanced dementia, it required engaging people with advanced dementia in advanced care planning process which you might hope would have impacts beyond the feeding tube to other aspects of potentially burdensome and harmful interventions for people with advanced dementia who are at the end-of-life.

Alex: Thoughts about that, Rashmi.

Rashmi: I think it’s a really good question and something that I’ve also been wondering about why are we seeing this different trend when we’re looking at IMV use. I wonder about the way in which the setting affects how these decisions were made. When we’re talking about IMV use, we’re talking in general in the hospital setting how clinicians are navigating those decisions with patients and family members.

Rashmi: One thought is, is there something about either the clinicians in that setting or maybe more importantly about the healthcare system and the way kind of hospitals are structured and what the priorities are for hospitals that is somehow also playing into that. I mean, I think since we’re talking about Joan’s much significant work in this area, her other work has showed that as you increase ICU beds in a hospital, you see more patients being likely to get intubated.

Rashmi: And so what is driving what, I think, is still a little unfair but I think that that’s one of the things that I’m thinking about, is the way in which that kind of setting is driving some of these differences.

Alex: Yeah. And to push back on that a little bit, Joan Teno’s other work or I think it maybe with Susan Mitchell, one of them, that tandem, showed that most feeding tubes are placed in the hospital setting. And certainly those conversations are initiated in the nursing home often around sending a patient to the hospital. But sometimes, the patient gets hospitalized for an aspiration pneumonia, people in the hospital say, “Oh, you know what? They really should have a feeding tube to protect them.” And I think a lot of their work has gone into educating physicians that feeding tubes are non-beneficial for people with advanced dementia.

Alex: And I have the sense that that same effort hasn’t translated to mechanical ventilation in the hospital setting. And I really do also appreciate your sense that there are multiplicity of factors at play, and it’s not just the individual patient preferences or the individual encounter with the clinician but there are these larger systematic factors which like an invisible hand to invoke sociology at the bedside with the patient as these decisions are being made like availability of ICU beds, is this the hospital that tends to put people on ventilators, et cetera.

Alex: I wanted to ask Zhi a question about Asians are a huge diverse population, right? And Asian-Americans even more so due to varying levels of acculturation. Thoughts about teasing apart different groups of Asians and immigrants versus non-immigrant populations and experiences of intensive care at the end-of-life care.

Zhi: Alex, thank you for asking that question and raising a really important point about the heterogeneity of our Asian-American populace as well as factors that we currently can’t capture in registry and claims data that are super important when we’re conducting large database research, especially in the setting of health disparities work.

Zhi: And I also like to just latch on with what Rashmi just mentioned which are we’re sort of exploring what factors beyond the intra and interpersonal factors that is contributing to the differences that we’re seeing. And one of them I do believe is the systemic misunderrepresentation as well as underrepresentation of Asian-Americans in large database work.

Zhi: When we look at why this work is so salient now, what we saw is that previous work on Asian-Americans simply did not address Asian-Americans as the focal point of their studies. Asian-Americans or Asian ethnicity were often used just as a variable, as part of the multivariate regression analysis to look at larger trends. And often, Asian-Americans are misclassified into other when the sample size is not large enough to do a sub-analysis focused on Asian-Americans.

Zhi: So, when we look at the last two decades, we really saw that there hasn’t been a nuance exploration of both this populace as a whole as well as disaggregating Asian-Americans into the most appropriate self-identified ethnicity. And part of that, I would say, speaks to the policies around self-reporting with regards to ethnicity data.

Zhi: Although in our study, we used the social security administrations variable which looked at how patients reported their own ethnicity when they try to renew their social security cards, we now know that these ethnicity identifiers are not culturally sensitive and does not capture patients and those who identify across the ethnicity continuum as well as the acculturation continuum.

Zhi: Alex, when we’re trying to do a similar study using the SEER-Medicare data, we were really surprised to learn that place of birth was completely taken out of that data set because the sensitivity and specificity around that variable were leading researchers to draw conclusions that were not necessarily generalizable to ethnic groups.

Zhi: And so I think there really needs to be a top-down effort to think about and strategize around improving our sensitivity, specificity around ethnicity modifiers as well as acculturation variables like length of stay in the US, immigrant status, and birth place.

Alex: Particularly as we become incredibly even more heterogeneous society, Rashmi is identified as a child of Indian immigrants. Was that right, at the start?

Rashmi: Yes.

Alex: And Zhi, you’re of Chinese descent?

Zhi: Yes.

Alex: I’m half white, one quarter Chinese, one quarter native Hawaiians, so we’re all becoming much more blended and heterogeneous, and we need a way of capturing that in these studies because we bring such variety of backgrounds to this topic.

Alex: Rashmi, were you going to comment on this?

Rashmi: Yeah. I was just going to say one thing to build on what Zhi was talking about that’s interesting I think about the Asian-American population is, yes, on one hand there’s so much heterogeneity to the point that the greatest income inequality within all racial and ethnic groups is found within Asian-Americans.

Rashmi: And yet on the other hand, I would say that there are some common elements about racial identity and where Asian-Americans are positioned particularly as it relates to whites and to blacks that there are some common elements that bring this very diverse group together.

Rashmi: And so I think to Zhi’s point about nuance, we need to be thinking about all of those aspects, the ways in which structural racism is experienced differently by this population as a whole and then ways in which there are differences for different Asian-Americans subgroups.

Eric: When we’re talking even splitting up into Chinese, Indian descent, we’re talking about over two billion people, probably close to half to a third of the world’s population. And then you can split that up even more refined like for Chinese, where in China? Are they Uyghur, completely different kind of … How would you practically do that? Maybe you are currently doing that, thinking about it, how should we be thinking about this in future studies?

Rashmi: I think one thing I would say to that is that I don’t think the fact that there’s so much heterogeneity and diversity of experience should stop us from doing research with these populations and understanding the experiences of different subgroups. I think you’re right in that if one is really trying to look at all of these different aspects, at some point, you’re down to an N-of-one, this one individual’s experience.

Rashmi: The reality is that there are a lot of broader common elements that transcend both like if I speak about country of India, there is a tremendous amount of diversity in India and yet there are certain, I would say, values and beliefs that do really cross all of those very diverse groups. And you can again extend that even to this broader category of Asian-American.

Rashmi: And so I think there are ways to look at the elements that are different and those that are the same. And I think it’s that common disclaimer of we’re not trying to stereotype people, but we’re trying to understand some of what the kind of core beliefs or kind of critical beliefs are that may inform someone’s preferences, their experiences based on the family they grew up in, where that family came from, et cetera.

Alex: I think it’s important to also situate our conversation in terms of the contemporary issues of the day. And we’re about a year out from George Floyd’s murder. We’re seeing rising rates of hate crimes against Asian-American, Pacific Islanders across this country disproportionately directed at older adults.

Alex: And I’m just interested in any reflections from the two of you on how that those experiences may be impacting people’s choices near the end-of-life. I know we’re running out of time, it’s a lightning round kind of question but that probably requires an hour of unpacking in and of itself. But any quick thoughts?

Zhi: Maybe I’ll take a step at that question I think. Alex, thank you for raising the question and I also wanted to address what Eric mentioned which is how do we address this seemingly insurmountable task of being culturally sensitive and not reducing everyone to an N-of-one. For my own experience as an Asian-Canadian and Asian immigrant living in the US, there was really the strong sense of not being seen, just feeling unseen throughout this entire journey.

Zhi: And that when we heard news of the hate crimes being directed towards Asian-Americans, there was a lot of doubt even within myself and my family as to whether this is truly targeted towards Asians, and is this truly a hate crime? And these sort of mixed feelings that I had, I worry, is also stemming from culturally not wanting to be provocative or not wanting to be seen as … I guess I’m at a loss of words.

Zhi: What I’m trying to say is that there needs to be more directed efforts to understand the Asian-American experience and not continue to contribute to this sense of otherness and this feeling of being unseen. I think when we think about realistic strategies around that, just thinking about oversampling of Asian-Americans in future studies, more directed efforts and resources for questions to understand how Asian-Americans want to be addressed, want to be cared for in their vulnerable serious illness journey. It would be an important first step.

Rashmi: And I would just add that as we think about this one year that has passed since the murder of George Floyd, I am filled with hope and optimism for the future because I feel like we are having conversations about equity and about racism, about anti-black racism, anti-Asian racism in a way that I do not ever remember having conversations before. And so I think it’s hard-pressed to find someone right now who doesn’t understand that these issues are important. And my hope is that that is going to translate into more funding for research on these topics and more really amazing research to answer some of these questions.

Eric: I want to be mindful of our time. I want to thank both of you for joining us today.

Alex: Thank you so much.

Eric: Really fabulous research, really eager to see what comes next from both of you. But before we end, Alex, a little bit more Halo?

Alex: A little bit more Halo. (singing)

Eric: Rashmi and Zhi, thank you for joining us for this podcast. It was fabulous having you on.

Rashmi: Thank you so much.

Zhi: Thank you.

Eric: And big thank you, Archstone Foundation, for continued support of the GeriPal podcast and to all of our listeners for supporting the GeriPal podcast and rating us on your favorite podcasting platform. Have a good night, everybody.

Alex: Good night.