LGBT Care for Older Adults and Serious Illness: Podcast with Carey Candrian & Angela Primbas

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

Alex: This is Alex Smith.

Eric: And Alex, we have two great guests with us today. Who’s with us today?

Alex: Two great guests with us today. We have Carey Candrian who is assistant professor at the Colorado School of Medicine. Welcome to the GeriPal podcast, Carey.

Carey: Thank you, Alex and Eric.

Alex: And we have Angela Primbas who is a third year internal medicine resident at Stanford and soon to be UCSF geriatrics fellow. Welcome to the GeriPal podcast, Angela.

Angela: Thank you. Happy to be here.

Eric: We’re going to be talking about the subject of care for LGBT older adults and those with serious illness potentially at the end of life. This came out of a gerontologists paper that we got, that Carey just recently published, in the gerontologist titled, “She’s Dying and I Can’t Say We’re Married?”: End-of-Life Care for LGBT Older Adults. We’ll have a link to that article on our show notes at geripal.org. But before we even dive into this topic, Carey, do you have a song request for Alex?

Carey: I do. It’s my favorite part. I request, my song its called The Story by originally by Brandi Carlile and later done by Dolly Parton.

Alex: And why this song?

Carey: I chose this song because it’s about the pain of having to be silent about who you are and who matters to you, which is the everyday experience for so many LGBT seniors. And I know we’ll get a glimpse of it, but one of my favorite lines later in the song, she says, “You see the smile that’s on my mouth, hiding the words that don’t come out.” And it starts quiet and then it gets loud and it keeps this cadence of up and down, which for me really captures the emotions and the stress of having to hide this fundamental part of who you are. And as I know, we’ll talk about later, the effects that this hiding can have on the individual. And then also what happens when this habit transfers over to health care.

Alex: Thank you. All right. Here’s a snippet.

Alex: (singing) “All of these lines across my face. Tell you the story of who I am. So many stories of where I’ve been. And how I got to where I am. But these stories don’t mean anything. When you’ve got no one to tell them to. It’s true, I was made for you.”

Alex: Thank you for that, great choice of song.

Eric: Which version do you like best, Carey?

Carey: I go back and forth. Though it’s always is a little bit tamer, so I’ve been on the Dolly kick more so right now, but maybe Alex’s version which sounded great.

Eric: Alex, how many of Dolly’s songs have we sung so far?

Alex: One, this would be the first one.

Eric: This is it so far?

Carey: Wow.

Eric: I feel like we need more of that. So Carey, before we talk about all the different components of this, I just want to know as somebody who’s doing research in the subject, how did you get interested in this specific population, is this a research focus of yours? When and how did you get interested in it?

Carey: It goes back a little bit. I’ll keep it short, but it really started my senior year in undergraduate. When I had my professor that was teaching a class called communication theory. And it really blew my mind the first day of class. He told us that people aren’t the problem, it’s the way people talk. That’s the problem. And if you want to change culture, you need to give people a new vocabulary. And that idea stayed with me. It was more impactful than anything I heard over those four years. And he later became my dissertation advisor. So I ended up going back to University of Colorado Boulder for my master’s and PhD.

Carey: And during my doctorate, he really encouraged me to start spending time in places that really interest me, that made me curious. And, I started volunteering at a local hospice in Colorado as a way of conducting an ethnography. And then I started shadowing an emergency department. I was blown away by so many things. And not just the way people were dying in both of these settings, but really the way people were talking to each other about death and talking about the way people were dying. So much of what was happening was clinical. And so much of what was happening was nonclinical.

Carey: How well did people understand their options? How well were people involved in decisions? How much of a voice did people have in the decisions they were making? And that point, it really became clear that with a PhD, which I ended up getting in communication, I was never going to be able to change an illness prognosis, but it could affect the way people talk to each other. The talking and the listening, which could also affect outcomes.

Carey: And, I also at that moment really became committed to blending the social and the health sciences, because I felt like that together they can really make meaningful change. And the LGBT piece came in really shortly after that, when I joined the faculty at the University of Colorado. I started shadowing admission nurses at a local hospice. And in one of the homes that we went into, this was the second admission conversation they had had. And so I was with the nurse and the patient who was considering enrolling in hospice was talking about her roommate and her friend who had been her best friend for 22 years.

Carey: And they had been cooking dinner every night and she was the biggest support. And, the nurse kept just reading through the standard form, standard intake. Are you married? kids? And I was sitting there thinking like, “Oh my gosh, just break the script and ask something different.” Because I knew that picking up on these cues that this woman in the room was more than a friend and she was more than a roommate.

Carey: But when the hospice nurse left, she was known as her friend, as the emergency contact similar to the story and the gerontologists. And so for me personally and professionally, I really became committed as being part of this community and also professionally feeling like I actually could make a difference for this community. Because it’s clear they have been historically marginalized their entire lives. And for them, particularly LGBT seniors communication, the way we talk and listen to them can really make a measurable difference in the care they receive and in their outcomes to break this habit of silence that has been ingrained with them throughout their lifetime as a way to really be safe.

Eric: I guess you’re talking about words matter, and I would just love a brief primer. I know in your gerontologists there’s LGBT. I’ve also heard LGBTQ, LGBTQ+, in this podcast, how should I be referring to this population that you’re studying?

Carey: Great question. I state LGBT for a few reasons. Primarily I think when you are working with older adults, the Q has been a word which usually stands for queer was what was yelled at them on the sidewalks and in the streets. And it carries really negative connotation for them. From seniors, I use LGBT and I think sometimes we do a disservice to ourselves with making it sound like alphabet soup and it can get so long that it makes it almost uncomfortable to talk about the community, which is not what we need. And I think what you just said is a wonderful communication move to just pick up on what someone is using and tend to use, try to mirror what the language of the other person is using. But I’m totally comfortable. I don’t know if Angela feels different, but I like to keep it LGBT.

Eric: Angela, what are your thoughts? You’ve done some training of resonance at Stanford in this population. How do you think about the words that we use?

Angela: Yeah, I think that’s a great question. I often use LGBTQ because that’s just what I was taught and what I’m comfortable with. I also use sexual and gender minorities because I think that, that encompasses a lot of people that may not fall into the LGBTQ categories without, like Carey was saying, having more letters added on. I think, in general, as long as you’re trying to be inclusive and understanding that if you say LGBT there’s more identities and people that fall into the overall sexual and gender minority categories that are not necessarily encompassed in those letters. And as long as you’re aware of that and respectful of that, I think saying LGBT or LGBTQ is almost like a matter of nuance and preference, if that makes sense.

Eric: Yeah, that makes sense. So for the sake of this podcast, I’m going to be using LGBT because I’m going to mimic what Carey is saying. And I apologize if I offend anybody. I’m willing to learn. So thank you. And Carey, you talk a little bit about disparities in care. What do we know about the LGBT population as they get older? What are some of the issues that they deal with that are not seen in the majority population?

Carey: So I’d like to talk about the disparities because there are a lot for this community, think of them in three buckets. Which are first are economics, second are family and social support and the third is this lifetime of stigma. So like the general population economics are an issue, but for older LGBT adults, statistically they’re worst. One out of three are actually living at or below the federal poverty level, for a number of reasons. One obvious is that marriage wasn’t legalized until 2015. So if they were with a partner, they were often denied spousal benefits and pensions, and many of them are more likely to live alone. And so they’re relying on this single income salary as well. Another big factor is the lack of family and social support.

Carey: They are two thirds less likely to be married, three to four times less likely to have kids. They’re more likely to be a stranger, even rejected from their families. And they’re even more likely to be isolated from peers. All of this meaning that they’re aging with a really thin network of support. And a huge underlining condition to all of this is really the effects of this lifetime of stigma and discrimination. Even now in 2021, there are still 29 States that don’t treat LGBT people equally, which means they can still be fired from their jobs, denied housing, denied care and other services.

Carey: And the Harvard Medical Magazine, this lasts fall of 2020, did this report that showed that the stress of the stigma and discrimination takes up to 12 years off of their life, which is, I knew it was bad, but I didn’t know it was this bad. And I think another huge piece, particularly for the seniors is they have been trained. For many of them grew up on being gay was illegal. They could have gone to jail for holding their partner’s hands. And so they’d been trained that the best way to stay safe is really to stay in the closet.

Carey: And so train that 75% of them actually do go back into the closet when facing really a major health transition or entering like things like assisted living or hospice. And so, it really becomes a wicked communication problem because you have this community who’s been trained their whole lives to stay quiet. And then you’re dealing with a healthcare system who really does need this information to provide, authentic person centered care. So it really becomes, for me, really a matter of the talking and listening as a way to show that it’s okay to trust somebody and to disclose this critical information.

Carey: And another huge piece and then I’ll stop is the data piece too. Because it goes back to this habit of silence is we don’t have data. So we know that the evidence for these disparities is enormous and we can’t do much about it because we aren’t routinely collecting sexual orientation and gender identity information to really be able to track some of these disparities and to develop intervention, develop services that are actually tailored to this community.

Alex: That’s a great overview and I like the structured approach to thinking about these issues. And I’m just struck that many of these issues have to do with the way in which society is set up, the way that our healthcare system is set up, the laws and structures that are in place. And I’m reminded of, in the 80s when San Francisco was the epicenter of the AIDS epidemic and gay men were dying in just astounding numbers, devastated and they were watching loved ones die, friends die, and they knew what was ahead potentially for themselves, if they were HIV positive. And yet their loved ones were often not the ones who are allowed to make decisions for them when they became sick.

Alex: And that was one of the factors that spurred the creation of advanced directives. So that people could assign a healthcare proxy, to make decisions for them in the event that they couldn’t make decisions for themselves. And I’m interested in hearing from you Carey in relation to palliative care, serious illness, hospice, end of life care. Are there structures in place that you think are potentially detrimental to highest quality care for LGBT people with serious illness?

Carey: That’s a great question, Alex. I think the one structure that immediately comes to mind is just even in many ways they’re unconscious, but just the heterosexualism that’s embedded in so many forms and so many of our structures and our ways of talking even unconsciously. So even thinking of palliative care, one of the things that we say a lot, I hear a lot, or we’d like to have a family meeting. And as innocent as that seems, if you are coming in this as an older LGBT person, one, that might trigger several things. One, you don’t have a family who would I even invite? A family meeting with the palliative care team sounds like a lot of people. That means I would have to disclose and come out not just to one person, but an entire group of people.

Carey: And if I’m not legally married, depending on where they’re living in the United States, would that count as family? So I think some of these scripts that we say or even a family caregiver, that don’t seem like they matter, they might not immediately close somebody back up. They have effects on people. And I think that’s what really comes back to the communication. But I think particularly for palliative care, the family meaning, the family caregiver, can be other structures that can be really paralyzing because they can feel like they’re a script.

Carey: And so if you’re not part of this script, if you’re not part of the system, you get silenced pretty quickly or you feel like you have to give a response that matches the script or matches the system. And a lot of times they don’t fit. And so they end up staying quiet.

Alex: Mm-hmm (affirmative). Do you have an alternative that you prefer to family meeting?

Eric: I love this Alex, because we just published a journal paper on family meetings. This is why I love doing these podcasts because I learned, oh wait, maybe I should do something different.

Carey: Now, all the listeners are going to come after me. I do. And actually it comes from one of the participants I interviewed, her name is Bookie. For her I had asked her, “What would you want people to ask?” And she said the question for her is, who has been the biggest support in your adult life? And so if you take that, we’d like to have a meeting with the people who are the biggest in your life. A few more words, but I can go a long way for people who might hear a family and your team and quiet down.

Eric: Everybody, get your letters to the editors to the New England journal. You can suggest we do something different.

Carey: But it’s not to get rid of the family meeting. I think that that is just to have other options.

Eric: I think that one of the challenges with language, I just love your thoughts. Is that, there are so many pitfalls that you may not recognize, especially when we add labels. Like a family meeting is a label to an intervention. Even when we’re talking about like LGBT versus LGBTQ, it’s a label that we’re trying to use as a shortcut. And it feels like anytime we use a shortcut rather than the whole long thing, we run into these potential issues, is that always going to be the case? Is there any ways to mitigate that?

Carey: Even a care meeting, it’d be the same amount of words.

Eric: Angela, what are your thoughts? So you’re also doing training of internal medicine residents. Is that right, Angela?

Angela: Yeah. Just a curriculum on issues in LGBTQ health, and healthcare delivery. And the trainings are more for the attending. So, internal medicine, in our residency, we have blocked out time to learn about these things. And I just requested that among the things we learn about, we learn how to take care of LGBTQ people and some of the unique health, not only health issues, but forms of discrimination that they face in our healthcare system.

Angela: And then the trainings are more for the attendings who have already gone through their education. And it’s more just condensed and it’s as straightforward as possible because we have usually less time.

Alex: Speaking of, can you give us the highlights in an even more condensed version for the podcast?

Angela: 100%. Sorry about that. So what I was going to say was, I like to use as general language as possible, to try and avoid some of those pitfalls. So I actually say like a care planning meeting. And so when I’m talking about family meetings. It’s not necessarily the most elegant language, but it’s general and mostly people can understand what I’m talking about. But when I’m tired and not paying attention, I do often say family meeting and I think it’s hard because that’s the way we’re taught to structure our thinking. If that makes sense.

Eric: What are some other highlights that you focus on in the teaching?

Angela: I think, just going with the theme of being as general as possible to be as inclusive as possible. For example, instead of our intake forms having two genders, we often just have a blank line where people can write in their gender and then we can have some examples. But, leaving things as general and as open as possible to be as inclusive as possible. And then using general language, like Carey was saying, when you’re talking about people’s support systems.

Angela: So instead of saying family, I’ll use words like loved ones or people who are important to you, to encompass the chosen family. Is that a lot of our LGBTQ, patients and especially a lot of our LGBTQ elders have incorporated as the important people in their lives. Does that answer your question?

Eric: Yeah, I guess it also sounds like, transitions are really important time. I can imagine like the transition to the hospital, the transition to a skilled nursing facility, the transition to hospice for these older adults. What do we know about those transitions and any thoughts on what we can do to make them better?

Carey: Well, I think it magnifies a lot of the things we have already talked about. So if you are entering this in a normal circumstance, you might not as be fatigued. You might not as be in much pain. You might have a little bit more effort or strength to maybe come out or maybe disclose information that we might not have. But when you are entering perhaps in more of a medical crisis situation, this habit of silence, and I think these scripts magnify and become harder to break. I mean, the more general, and the more ways we can open it up and provide space to say something different. I think the smoother these transitions can go in and doing so give the information that’s really important to know.

Carey: Who is their biggest support. Who can advocate for them if they’re no longer able to make decisions. And so being able to get this information quickly and get it in a way that they feel that they can trust you and dealing with it, doesn’t put the onus is necessarily on them to be the one that has to keep coming out over and over again, especially in a crisis.

Alex: I wanted to ask, lesbian, gay, bisexual, transgender, there’s a huge, tremendous heterogeneity. And we put them all into one string of a few letters. They’re not the same. And as we saw in San Francisco, we developed springing on the theme of the HIV epidemic in the ’80s, robust infrastructure of support for gay men. And then where are the transgender individuals referred to, where they’re referred to the HIV clinic which sees gay men and they don’t feel like their unique needs are being met.

Alex: And then building on something that you mentioned earlier, Carey, about economic disparities in particular. We can’t assume however that the patient in front of us is less wealthy than most patients or is poor, because there’s tremendous heterogeneity there as well. Given all of these individual variation, variation within groups. How would you ideally like clinicians to approach this issue?

Alex: Some of this is about educating people about attitudes, socioeconomic situations that are common and prevalent. At the same time, you don’t want to build in stereotypes, into certain people. That was a bunch of different thoughts. I don’t know, just riff on any of that. Angela, do you want to start first?

Angela: Yeah. So I think you bring up a great point. The community that we refer to when we say LGBT or LGBTQ is very diverse and cannot be encompassed in a handful of identities that we often use to generalize about the community at large. And I think it’s really hard to teach people all the nuances of the different forms of discrimination and the different health equity issues that face each individual population. And I try and do that as generally as possible for the curriculum that I help create.

Angela: But the overall theme, I think, especially if you’re trying to educate general providers who are not going to be specialists in studying LGBTQ health or one specific focus within that much broader sphere is, teaching people the general issues with health equity and access and discrimination that many of these groups have faced.

Angela: And some of the specifics in between them, but then also, making sure that people are just approaching patient histories and stories as open-mindedly as possible without any preconceived notions. And really just using language and using ways to, to allow patients to identify their gender identities, sexual identities, their stories themselves, and give you that information in a safe way, or in a way that feels safe for the patient, if that makes sense.

Angela: So that’s where our education is focused, in trying to create safer spaces for our sexual and gender minority patients, to tell their stories and to express their concerns and to feel like they’re listened to. And if providers don’t know an answer to a question or have a solution to a problem, we try and teach them where to go to ask those questions or to find more information, if that makes sense…because it is really hard.

Alex: By way of follow-up, I want to ask a more specific question. I’ll try this time. I’m not very good at specific questions, but let’s go. Clinically, do you think that, geriatricians people caring for older adults, people caring for people with serious illness, hospice nurses, palliative care docs, social workers, should we ask every patient about their sexual gender identity? And if so, how should we ask?

Angela: Great question. I think it is important to ask, because think you get in a lot of trouble when you assume. I think we can make a lot of assumptions that then end up impacting patient care in a way that is detrimental. So I think we should ask, and I think that it’s fine to just ask as generally as possible. So, going back to the theme, I think keep rehashing. Like on my clinics intake forms, I have a space for sexual identity, gender identity that I allow people to identify themselves.

Angela: For a lot of my older, straight cis-gender patients are like, why is this here? But for my patients who do not fall into those categories, they appreciate having a space to identify the way they would like to. And I think we should ask. And I think just saying something as simple as what is your sexual identity, what is your gender identity, is fine.

Carey: I completely agree. We need to ask, in large part for the reason of the data. There are two things though. I think that in order to do it effectively though, you do need to roll it out with awareness and education and training. Because as we saw in the story in the gerontology with Esther, it can be consequential no matter where you are, if you’re dealing with something. Because it can be grounds for further discrimination. So I think just mandating it to be collected is not the right approach without proper training.

Carey: And I think the other thing that particularly for the older adult population is to then do something with it. And I think it needs to be beyond a checklist, but to the extent that it actually opens up the conversation or leads to a more meaningful conversation about what matters and who matters. Because I think for a lot of older LGBT adults, for them, it’s not as important to know if someone is gay or lesbian or bisexual. I think what is more important is really how does that then cue the provider to have a different conversation or to maybe ask things differently, becomes important. So it’s almost like collecting it but then also using it to inform care, I think would be the ultimate goal.

Angela: Wholeheartedly agree. Yeah.

Eric: That also reminds me of, someone said, I think both in geriatrics and palliative care, it’s good medicine, same thing with geriatric, there’s just good medicine. We should be doing that. How much of this just applies to everyone. We should be having more non-judgemental open conversations, which is going against where medicine has been going for the last couple of decades where radio boxes and checklists are the way we’re actually doing notes nowadays. And now we do notes is how we have conversations, thoughts on that?

Angela: That everyone should be?

Eric: Yeah. This is just good medicine. All of our conversations, not just for this population, but for everybody should be much more open and less checkboxy.

Angela: I Wholeheartedly agree.

Carey: Totally agree.

Carey: Because I think to be open, you don’t necessarily need to agree with someone, to be open is to be able to provide good care and that should be happening all over.

Angela: Yeah. And you miss a lot of the nuance when you’re just focusing on check boxes. People are complicated and don’t fit into the check box form of medicine many times. And I think that you can miss a lot of really important aspects of the patient’s social and medical history, if you only do that.

Eric: Yeah. But then it comes at a cost because Carey, you also advocate for like, this stuff should be on intake forms. Which is, if we don’t ask and I think that the more open we are, the less likely we’re going to drill down to some specifics. We should be asking about, sexual orientation and gender identity and these intake forms. How do you think about that? Like, we should have some structure to these intake forms, but they should also be open enough that we can see matters to people?

Carey: Yeah, I think having it more open would be my vote because even if, I keep going back to Esther, but she did fill out the form. It came back to really affect the care she received. And I actually think for the old, I think the more open conversation actually gives them more important information anyway than immediately restructuring the forms. I think that eventually, just did normalize. I think part of it too, like we do with race, ethnicity, just so it becomes more natural to see and get used to. And a reminder that everyone has an orientation to check the box.

Eric: I guess my last question to both of you is if there are two things that you wish practitioners would do different, going forward or things that you really want to advocate for. If you had a magic wand, you can change people’s behaviors just with that magic wand right now, what two things would you advocate for you change? Around the issue of LGBT care for older adults or those with serious illness. Carey, I’ll start off with you.

Carey: I think one is to not assume anything. Second would be, as much as you can try to break the scripts, try to break some of the common habits we use and get so accustomed to using. And guess maybe a two and a half would just start, because I think we’re so to begin to think about the things you’re saying or the way you’re listening might affect people differently to try to bring some awareness to actually when we are speaking and listening, we are affecting the person positively and negatively.

Eric: Angela what’s your two?

Angela: I agree with the removing assumptions. I definitely, wish I could wave a magic wand and make all providers just kind of remove all their preconceived notions and assumptions of patients. But I would also love to remove judgment, if I could and bias because I think Carey brings up a great point. We’re asking people to be open with their gender and sexual identities, but we also need to provide a safe space for them to do that. And I think the way we do that is removing our own biases, whether conscious or subconscious as providers. I would love to do that, with the magic wand instantaneously, make things a lot faster and easier.

Eric: Last question for me, do you think, Carey as you noted in your article in the gerontologist in this 2018 survey of 865 hospice professionals, 43% of respondents reported having directly observed discriminatory behavior towards LGBT patients. That is just an incredibly high number. And I wonder, should we be asking patients who are LGBT about experiences of discrimination?

Carey: Yeah, and they do talk through some of the things that they did find, and it ranged from staff really nice when couples were holding hands to not including the partner in major decisions and even disregard a patient wishes. I would actually focus more on the staff and the training of the staff. Because I think we know what’s happening and I think that’s why they’re afraid, they have a reason to be afraid. The other ARP showed that 40% haven’t come out to their provider. 46% of transgender patients have reported receipt were actually being denied care.

Carey: And then you have this 42%. They’re not crazy for being worried and for the fear as to come out. So I think at this point we really need to and the assisted living too really become such a secure option for them. And in many ways the staff becomes their family if they’re coming in the loan. So I think the focus is really on the staff and the interaction level now. And part of it, I think is just awareness of we’re hopefully opening hearts and minds. Because I think we know enough. I don’t think we need to ask any more. We know that it exists now. I’m just saying just that we can do something about this so that they can access hospice and have a good experience with it.

Eric: Yeah. I said that was my last question. I got one more question for you, Carey, what’s next for you? How are you planning to tackle this issue around [crosstalk 00:39:40]?

Carey: I’m actually really interested in, in figuring out a way to collect SOGI in hospice and have it be routine, but done in a way that actually leads to better conversations and better care. And it’s done in a safe way that people feel they can disclose it. So I’m going to start with the admission nurses. I think it’s a multi-part, but [crosstalk 00:40:04].

Eric: And that’s what training admission nurses?

Carey: Yeah. Thinking about how to train this, what would it look like? And then obviously addressing the stigma and bias too. And we haven’t even gotten into the other intersections of being LGBT when you add in race and disability and all these other things or dementia continues to escalate. So hospices is where I’d like to go next.

Eric: Well, I want to thank both of you for joining us today. And thanks for the work that you do. And before we leave, how about we get a little bit more of that. I’m going to call it the Dolly song.

Alex: The Story? All right. I’m going to try this verse that Carey mentioned at the beginning. I have not practiced this ever, but we’ll just try it anyway.

Alex: (singing) You see the smile that’s on my mouth. It’s hiding the words that don’t come out. All of my friends who think that I’m blessed. They don’t know my head is a mess. No, they don’t know who I really am. And they don’t know what I’ve been through like you do. And I was made for you.

Eric: Wonderful.

Carey: Great job, Alex.

Eric: Thank you both again for joining us. Do you have one place for resources around the subject, if people want to learn more? We can link to that in our GeriPal show notes. Either of you have a good resource?

Carey: I would say SAGE LGBT Advocacy Services is terrific and part of the LGBT National Resource Center.

Eric: Great. Angela?

Angela: I was going to say the LGBTQ National Resource Center. That’s where I often direct people.

Eric: Awesome. We’ll have links to both of those in our show notes. A big thank you both for joining us today. Thank you to all of our listeners for continuing support and listening to those podcasts. Please take a moment and refer our podcast to two of your colleagues. Please share the wealth. And then lastly, as always thank you Archstone Foundation for your continued support. Goodnight, everybody.

Alex: Goodnight folks.