Making decisions about serious illness and end-of-life care are never easy, but those choices can be even more difficult for people facing the fear of discrimination. That’s the case for many members of the LGBT population. According to the Healthy People initiative from the U.S. Department of Health and Human Services, more than three-quarters of LGBT adults withhold their sexual orientation when seeking long-term care. Palliative care helps people living with serious illness and their family caregivers live well, and it works best when individuals and their care-providers effectively communicate. It’s especially critical for people making those important choices to have the freedom to be open about their lives.
On this episode of HealthChangers, we hear from Carey Candrian, a 2018 Cambia Health Foundation Sojourns Scholar and a researcher at the University of Colorado who is dedicated to breaking down barriers for LGBT seniors.
Leslie Constans (LC): Carey, I would love to hear a little bit about your career path and how you got started in the work that you do.
Carey Candrian (CC): Senior year, I took this class that was called communication theory with Stan Deetz. It was a class on the science of communication and started talking about the effects that communication can have. The way we talk and listen to each other, the effects that this can have on other people. Even more, he started showing us how communication created these larger systems and discourses of thoughts that influenced us. They showed us how to act, how we should behave, what we should say, what we shouldn't say. Things like a system, like what a family looks like, what marriage looks like, what a professional looks like, what having cancer looks like and what being on hospice looks like. In doing so, he really showed how these systems become deeply ingrained in our vocabulary, the way we talk and listen, which means they become hard to disrupt. This class, for me, unraveled everything because I had never heard it and it completely blew my mind. On that first day, the teacher said, "If you really want to make a difference in this world and to change culture, you need to give people a new vocabulary." This idea has stayed with me so long. It affected me because I saw that the way language and interaction, became constrained when people were not able to freely and openly express who they were.
LC: Let me see if I understand this correctly, you've really dived into communication as a means of addressing systemic barriers, right? How do you use communication to break down those barriers? Am I understanding that correctly?
CC: Yeah, exactly. I think if language is the reason why people are feeling shut out, it's going to be language that allows people to get back in and at be able to find a way to express themselves freely and openly in the face of serious illness. When religion is part of the interaction, or sexual orientation, gender identity, race, ethnicity, age, all these things enter, they can advantage and disadvantage people.
The older LGBT population has been historically stigmatized, really their entire lives. When I talk about the disparities, I think it's easy to put them in three different buckets. The first one is economics, the second one is family and social support, the third one is the effects that this lifetime of stigma and discrimination has on their life, and then what happens when they do face serious illness or end-of-life.
LC: Tell me a little bit about how you got into the work with the LGBT community, and specifically with seniors.
CC: When I joined the School of Medicine and the faculty there, I started shadowing. I did this in college and was volunteering at hospice. I started shadowing admission nurses who would go out to patients in their homes when they were thinking about enrolling in hospice. We were shadowing all over the state. One particular patient I had gone to, this was her second enrollment conversation, she had another woman in the room with her and the nurse was talking through the scripts and forms that they had for hospice and the traditional, “Are you married? Do you have kids? Who's your medical power of attorney?” The patient at the time was talking about the other woman in the room, how she was her emergency contact.
She had been living with her for 22 years, but she didn't say that they were married, or even that she had a role beyond a friend. The nurse went through the paperwork and then left. When she left, this other woman in the room was only known as the patient's friend and the patient ended up enrolling in hospice. I interviewed the couple afterwards, which I later found out was in fact, a couple. I think it really clicked with me thinking of the impact that communication and these scripts, that have become so ingrained, the consequences that they can have on the way people make decisions and even later on, their care. I became committed to doing something about this, and I really felt like I could, coming back to the communication, give people a new vocabulary and allow some space in the way that we do something as routine as talking about hospice.
LC: Wow. What an interesting foray into this work. Carey, can you tell us a little bit more about some of the challenges, or the disparities, that this community faces? Particularly when it comes to serious illness, end-of-life and hospice care. I'd love to hear a little bit more about that.
CC: The older LGBT population has been historically stigmatized, really their entire lives. When I talk about the disparities, I think it's easy to put them in three different buckets. The first one is economics, the second one is family and social support, the third one is the effects that this lifetime of stigma and discrimination has on their life, and then what happens when they do face serious illness or end-of-life.
First, economics. They, like the general population, they struggle, but statistically it's worse. One out of three older LGBT adults live at, or below the federal poverty line for several reasons. In a large part because they have been denied most of their lives of spousal benefits and of pensions with gay marriage not being legalized until 2015. Many of them are more likely to live alone, which means they're relying on a single income.
Another huge factor is the lack of social and family support. They're two to three times less likely to be married. They're three to four times less likely to have kids, and therefore grandkids, and have the traditional caregiving structure we think about in health care. They're also more likely to be estranged, even rejected from their family, and they're even more likely to be isolated from their peers. All of this means is that they're aging with a fragile network of support.
Then, a huge underlying condition to all this, which is really my biggest interest, is the effects that this lifetime of stigma and discrimination has had on them. This generation grew up when, really, being gay was illegal. They could have gone to jail holding hands in public. They lost their jobs, many of them lost their jobs. They could have been kicked out of housing. Many of them were denied care because of who they were and because of who they loved. Even now, in 29 states you can still be legally fired from jobs, or be denied care because you are LGBT. I think that, for me, and I think why it affects end-of-life so much, is that they've been trained that in order to stay safe, they had to be quiet. They were trained from way back when, way before Stonewall in the 1960s. It was unthinkable to be out. So many of them have adopted this habit of silence really throughout their lives. Then it becomes hard to break when—
LC: Sorry. I just wanted to ask, what is the age range when you talk about LGBT seniors? What is their range of ages today?
CC: When I say that, I'm talking about those who are in their sixties, their seventies, eighties and nineties.
CC: Great question. They've had this habit of silence that they've been trained, so trained that 75% of LGBT seniors go back into the closet when they face a major health transition or enter assisted living. Which for me, becomes a communication issue because, aside from the mistrust that they've had with the health care system. AARP did a recent study and showed that 40% of those of LGBT people who are in their sixties and seventies, 40% have not come out to their health care providers and the same study showed that 42% of transgender older adult patients have reported being denied or receiving inferior care. So, you have this unbelievable challenge where you have this generation that has been trained to stay quiet about who they are, so that they don't receive inferior care.
They have a good reason to be scared, just with the 42%. Also, in 2018, this survey of over 800 hospice professionals reported that 42% of the staff had seen discriminatory behavior towards LGBT patients, from rolling eyes when couples were holding hands, to actual disregarding of patient wishes and even not including the partner in major decisions. It’s this fundamental communication problem because it becomes an issue of if they don't feel safe, they're not going to come out and disclose critical information. If they're not disclosing critical information, the provider’s operating with incomplete information, which makes any medical situation challenging. It really becomes magnified if you end up not disclosing who you are, or the most important person in your life. Later on, that person is excluded from care meetings. They're not able to advocate for you. They're not able to receive bereavement support. It becomes a complicated situation. Talking about those disparities, there's so many ways and so much work to be done in these areas, but the level of interaction is where I'm particularly focused.
As I was volunteering in hospice early on in graduate school, and then later in the emergency department, I started to see just how much of what was happening and how severe the disparities were, not just happening on the clinical level but also happening in the interaction in the non-clinical level.
LC: Tell me a little bit more about that and what is the role that communication, and that interaction play in improving the experience of patients with serious illness, and in addressing the disparity that they have often faced.
CC: When you think just broadly, the biases we all carry and the assumptions we have, really can color the way we speak and listen to each other which then can either constrain or enable a more meaningful conversation. I think it's clear with the story and I know you've heard it before, but I think the story of Esther is so poignant because it really represents just how important communication becomes.
So, her partner had a rare form of leukemia and was in and out of the hospital. As they were filling out paperwork, they had checked the box for married. After they did that, they noticed that the nurse started behaving differently, spending less time in the room. As Esther's partner became sicker, she asked Esther to stop checking the box for married because it became too risky for them, and they didn't want it to affect their care even more.
LC: Oh, wow.
CC: Yeah, and they had been together 33 years, so, at that point, Esther stopped checking the box for married and went forward as Kathy, her partner's, emergency contact. When Kathy died, Esther was known to the hospital as Kathy's best friend, which meant that before she died, she was not considered, “family.” She was excluded from care meetings, wasn't allowed to be with Kathy when they were giving critical details about her condition and treatment plans. Then, when she did die, as being known as a friend, she experienced tremendous, disenfranchised grief for not having a loss be acknowledged, therefore not even being acknowledged as your partner. It spiraled out all these clinical outcomes, but the root of the problem really was a communication issue.
I think if the question had been, “who matters to you? Who do you want next to you in the room to hold your hand?” and then making sure that those biases and assumptions, not necessarily go away, but are minimized so that they can be with them and be able to be with their partner when they are dying.
LC: Carey, what has it meant to you to make an impact on this community? And what are some of the key takeaways from your work helping LGBT seniors? I was also wondering if you could just define for us your use of the term LGBT.
CC: LGBT, which means lesbian, gay, bisexual and transgender, I use for a couple of reasons. Primarily when working with LGBT seniors, who are my primary focus, the Q, which traditionally stands for queer, was really something that was incredibly derogatory. That was yelled at them when they were on the streets and became a term that they rejected. They leave it off, I leave it off. Another reason is that I think that sometimes when we do, it can get so long with the letters that it really becomes like alphabet soup and can make talking about this, that already can be uncomfortable, even more uncomfortable. I keep it short for those two reasons, but I do think what you did is such a great move too because it is part of it too, using what other folks in the community use. I think is also a great way of just being in connection with the other person and showing respect and trust.
LC: That makes a lot of sense. Can you just share a couple things about what this work means to you?
CC: What has it meant to me? It's meant everything. Because as a social scientist with a background in communication, I knew I wasn't really going to be able to affect things happening from a medical perspective, or on a clinical level. As I was volunteering in hospice early on in graduate school, and then later in the emergency department, I started to see just how much of what was happening and how severe the disparities were, not just happening on the clinical level but also happening in the interaction in the non-clinical level. At that point, I became committed to this population because I felt like I could do something about it. Personally, I think to be part of the community too, I think meant a lot to me that it I did see through my own experience the effects of how language had shut me out for so many years, and how language was also the way I could get back in and express what mattered and who mattered to me.
Being able to work with a population that has had it so much harder than so many, I think of the younger generations. Not necessarily that the stigma and the discrimination went away, but when you realize that this generation has fought the hardest to come out, it's meant everything to help them just a little bit. Hopefully it can make it easier for them so they are able to say who they are and who matters to them when they need it the most.
I think it's so easy to forget how powerful these scripts are and how they become unthinkable, how paralyzing they can really be for people who don't fit those scripts or don't fit those systems.
LC: How has working with this community changed the way you look at health care?
CC: I think the big thing that comes in working, and so much of my work has been more community-based, is how constraining some of these scripts and even systems of thinking, even the system of heterosexism within the health care system, can be and can influence the LGBT community. I think about how the scripts and our verbal habits and cues really take on a life of their own. I think it's so easy to forget how powerful these scripts are and how they become unthinkable, how paralyzing they can really be for people who don't fit those scripts or don't fit those systems. I think the innovation really comes in finding ways to break them so people can give a different response, so people can feel that they can say who they are and can say who matters to them.
It's hard to find that space when you enter and you're getting the same form, you're hearing the same questions, and then you have one person, then you have a team person. It's this constant over and over because you do face a choice as an LGBT person, particularly the older adults who've had this habit of silence. Do you break the script and come out and possibly get worse, treated worse, or do you stay silent and not talk about the person that matters to you? It becomes a very real choice and a heck of a choice because I think in normal situations it might be easier to come out.
When you are facing more of a medical crisis, or something like the end-of-life, these things matter even more, become completely magnified. The onus becomes on the patient who has been trained to stay quiet. Our best option is instead of making them continue to face this choice after they've lived the life that they've had, is to break some of these scripts, some of our verbal habits, to really help overcome this lifetime of silence.
I had given a talk about a month ago and someone asked me, "Aren't you setting the bar too low?" It bugged me in the moment. I kept thinking about it and thinking. I know that there's so much with policies and non-discrimination things that need to be done, but I don't think it's setting the bar too low because I think we can sometimes forget just how paralyzing these verbal habits and scripts and forms can be when you don't fit.
LC: As a Cambia Health Foundation Sojourns Scholar, which is a two-year grant program for leaders advancing palliative care, what was your project? Can you share a few things about your work as a Sojourns Scholar?
CC: A lot of what we've talked about in my project was to develop guidelines for hospice admission nurses to talk with patients, and those who care for them and or their families, about what hospice is. Then, doing so in a way that can create space for people to also give an answer that's outside the traditional script. A big part with these awards and with my award has really been on the leadership and the advocacy, which I think is so innovative about the awards. The relationship between research as a form of leadership and advocacy has been important for me and my experience as a Cambia scholar.
LC: That's wonderful. How will you broaden this work across? There are so many settings, obviously, for communication in the hospice world, how do you bring that across the country?
CC: One area that I'm trying to move into, and I think how to really continue the reach beyond community and beyond Colorado is, and for this podcast too, we focus a lot on how stigma and this habit of silence affects LGBT patients on the micro level. When we think about the disparities that LGBT people face, we don't have any data because we don't, like race and ethnicity, routinely collect sexual orientation and gender identity information in hospice and palliative care. We aren't collecting this information, which I think does a couple of things. One, it continues to denaturalize and not normalize talking about this and being able to collect this information. Then without this data, it makes it really hard to affect change on a national level or even begin to see what is actually happening to LGBT patients and hospice. What's happening to their caregivers? What is their experience on palliative care? Without this data we can't do much and it does come back to, if we're not asking these questions, we're certainly not going to get it. We do need to start asking about it. I think the challenge, again, comes back a little bit to Esther too, that we can't just switch, I think, is the challenge with this community. To just roll out and mandate hospices to collect this information without proper training and education is the biggest challenge.
Because if you do, depending on where you live, or if you've been trained to stay quiet, if you come out, your care could be affected. Coming back to the 40% and the 42%. So, finding a way to do this, not just for the data, but to be able to show the recognition of other identities, but also have this information affect the conversation, and then tailor the conversation to the care knowing that questions might need to change, the conversation needs to change based what you're learning.
I think the collection of SOGI for hospice and palliative care is a way to begin to move this nationally. Just to start talking about this more, having it be more common, being able to actually track the data, track outcomes and then actually be able to meaningfully reduce the disparities once we know what's really going on.
LC: Well, thank you so much, Carey. This was a wonderful conversation to have with you. Your work is enlightening and so important, and we just want to thank you so much for being on the podcast with us.
CC: Thank you so much for having me, Leslie.
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