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    Transcript: Challenges in Hospice Care: Connecting With Joseph’s House

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    Host: Clarence Fluker 

    Guest: Liz Fehrenbach

    Fluker: Welcome to “Beyond the White Coat,” presented by Community Health Connect — an AAMC program that facilitates conversations about issues related to health disparities, social determinants of health, and other public health concerns in the District of Columbia.

    I'm Clarence Fluker, director of community engagement at the AAMC. Today, I'm going be talking with Liz Fehrenbach, program director at Joseph's House. Joseph's House is a nonprofit organization that provides respite and hospice for individuals experiencing homelessness in Washington, D.C.

    In her role as program director, Ms. Fehrenbach develops and implements policies and procedures; oversees quality improvement and management; and supervises a care team of registered nurses, social workers, care aides, and service year volunteers. Ms. Fehrenbach has worked as a registered nurse and care coordinator for HIV-positive adults and individuals experiencing homelessness for 11 years.
    Thanks for joining us, Ms. Fehrenbach.

    Fehrenbach: Thank you.

    Fluker: My first question is if you can just tell us a bit more about Joseph's House and the work that you all do there.

    Fehrenbach: So, we're a special little place; we're an old Victorian home in Adams Morgan. We are celebrating our 30th anniversary this year. We were started as a hospice for men with AIDS at the end of life, and as the HIV epidemic has changed, we've changed as an organization, too. We've shifted — primarily, now, we are trying to serve folks who need some really intensive medical care and support to get better but are planning to return to the community. And we still do hospice care, as well, for homeless individuals that have HIV, or sometimes folks that have another terminal illness. So, we're, right now, a hybrid of hospice and respite care for homeless individuals.

    Fluker: What are some of the unique challenges that Joseph's House faces providing hospice and respite care to those experiencing homelessness?

    Fehrenbach: I think there's a few big challenges that come to mind. One of them is that we're operating at the center of what I think is sometimes called a syndemic — so, a number of health issues overlapping with each other and exacerbating each other in a way that it's hard to kind of wrap your arms around one of the issues without having to tackle the other ones at the same time. So, the overlapping issues that we see coming together are homelessness, HIV, substance use, and mental illness — and all of those overlapping on each other and making it really hard to support the person as best we can. Because we're trying to piece apart each of those and do right by the person on, you know, multiple domains, and I think that's the biggest challenge. Because we're operating in a system that hasn't supported folks — they've fallen through many cracks and safety nets before coming to Joseph's House.

    And we're often trying to figure out where to start, how to best serve the person, what can we do with limited access to resources or resources that aren't really designed to truly serve marginalized or really vulnerable people. So, under that description of sort of meeting people where they're at, we're trying to adapt our services to really get into all of those issues, and it's a constant learning curve to do that well. So, that's probably our biggest challenge.

    The second challenge that I think we see often when serving our folks is something I've talked a lot about with students and with other people visiting Joseph's House — and that I've seen over my work with homeless folks over the years. And I describe it as the rubber meeting the road, really, where all the learning I've had in a classroom setting or in a hospital or a more clinical setting — really seeing what that looks like for individuals on the ground. And having to adapt care to make sure that it's really meeting their needs.

    The example I often give is from a few years ago at my last job. We had a patient that we were working with — he was street homeless, he was a heavy drinker, and he had an infection, and I think he was prescribed clindamycin four times a day. And that was a really impossible recommendation for him — to try and take a medication four times a day. And it was a chance where we could advocate to his health care providers and say, “Hey, I know that that is maybe the best treatment for what's going on for him, but is there a way we can adapt it so that we can improve adherence, improve his ability to get medication to treat his illness, and reduce harm to him that way?” And so, that's a challenge we face at Joseph's House, too, is taking what people are getting as recommendations for their care from the providers and trying to adjust them or adapt them so that they truly serve the needs of that individual.

    And I think, in some ways, it's — I feel really lucky, in that sort of tragic and unfortunate way, that I've had this opportunity to see how to take clinical practice and really adapt it to the person that's right in front of me.

    Fluker: Do you think that students in the health professions get enough information during their, you know, during their schooling that really prepares them for serving this population?

    Fehrenbach: Hm, that's a good question. I think they get a lot of context — I feel like there's conversations about taking care of patients in context and paying attention to those, you know, social determinants of health and people's — the ecosystems that they exist in. In some ways, it's very hard to realize it until you start practicing it, because some of the ways that I think I've adapted the care I've provided or I've helped physicians prescribe or apply over time — some of the adaptations we've made are so miniscule or so mundane. You know, I think about transitioning somebody from one type of medication box to another one — maybe one that opens a little easier, you know, with your hands if they have arthritis or if they have some unsteadiness with their hands.

    And I think how small those actions or changes can be — they're probably hard to teach in school. You can maybe talk about the idea that you might need to be ready to do those types of things, but in some ways, a lot of that comes through the work, through the practice. And I guess I would say that the thing that could be probably taught more is that mindset of creativity or adaptability in concert with the idea of what's best practice.

    Because I never want to say, “Don't do the thing that's the best practice.” I think that's another thing that comes up in homeless health care is — our folks, often, I would say — they don't necessarily get the best standard of care because there's an assumption that they can't follow through or they don't deserve it or — or it's all very complicated that way.

    And I don't want to go down that road, so I want folks to be able to access the best standard of care, but I also wanna apply that creative lens to say, “How do we take that and ultimately reduce harm to the people we serve?”

    Fluker: You've used the word “adapt” a lot today, and so, I think that's a really good segue to the adaptation that we're all dealing with right now — because of the COVID-19 pandemic, we've all had to adapt in different ways. Can you tell me a bit about how the pandemic has impacted the daily operations at Joseph's House and what adjustments have you all had to make?

    Fehrenbach: Yes. Yeah, adaptation is definitely the name of our season at Joseph's House. Starting in March, we have made so many significant adjustments to the way we run business at the House. So, I think for a long time, we've asked ourselves as an organization, “What do we do differently? What's that thing that we offer to folks?” And a lot of what we come down to is relationship and interpersonal connection, and maybe that there's something powerful there, something healing in building relationships —  as a community, with the people that are living in the house, with former residents. And a lot of the things that were our bread-and-butter, as an organization, to build those relationships — they are not accessible to us right now.

    So, an example is our beloved daily breakfast at 9 AM — all the current residents around the table, former residents are invited, other people in the community who just need a community to share a meal with — all of us sitting down together, staff and residents, and sharing that time together. Not only is it a really lovely meal, the food is always good, but the interpersonal connection where it's just a great time for residents to connect with each other and with staff. And it's also a great time for our nurses and providers to do assessment. It's a great chance to see, “How are people eating? How are they walking to the table?” It's just, it's really the center of our community, and we don't have breakfast together anymore. We have staggered mealtimes, we have some folks eating in their rooms — that's just one — that's sort of representative of all those changes we've made as an organization.

    I think that, in some ways, we look a lot more institutional than we did six months ago, and of course, ultimately, that's to keep our residents safe. They're extremely vulnerable, but it hurts a little bit to see it in practice, and we're constantly thinking of ways to build that interpersonal connection and human touch back into the ways that we've had to change over time.

    Fluker: I know that community is really important to nonprofit organizations who work with people experiencing homelessness, because often their population does not necessarily feel a part of the community. And so, what you just talked about with the staggered mealtimes, some people now being in their rooms a bit more often — we talked about their physical safety, we know that you're doing that for their physical safety. But how do you think the pandemic may have, if at all, impacted their mental safety?

    Fehrenbach: Yeah, that's a great question, and it's something that we talk a lot about as our leadership team and our staff. The residents definitely have been more isolated, like you said, and I think with their underlying — so many of them have underlying mental health issues, that we have been trying to support them to connect to care and get the support they need. That isolation is not good medicine for them. We've really seen an exacerbation in their existing mental health diagnoses, you know, things like increased paranoia, increased — maybe an increased sense of voices, those sorts of things.

    And the other piece that we see — many of our folks have the HIV-associated and neurological symptoms, and sometimes those can get better when folks get back on their medication. Some of it may be chronic, but we always hope to see improvements for folks when they come to the House.

    And again, the isolation really gets in the way of those gains, I think. We have noticed that people who have HIV-associated dementia or neurocognitive impacts — that those are either just not getting better, and we don't know if it's the isolation or that's just going to be their new baseline, or if — or we see them getting worse, the symptoms.

    So, one thing that we did with some of the COVID funding we received is arranged to have, now, a therapist on staff at Joseph's House. We've had a social worker and have always worked really closely in collaboration with mental health agencies in D.C., but this is a really exciting thing that we — it's one of those things that we wished for, anyways, to get funding, before the pandemic. And I wish it didn't take this to bring that service to the House, but now that we have it, it's been really great.

    Our therapist connects with folks in a very nontraditional way, not just that kind of classic one-to-one, you know, very structured sit-down type of session — but also has gone on bike rides, socially-distanced bike rides around the block with folks, or taken a walk around the neighborhood together, or played cards nearby each other, and — which has been really great. Because a lot of our folks were very reluctant to engage in individual therapy — they weren't so sure about it, and this helps introduce them to the idea that it could be made accessible to them.

    Fluker: That's wonderful. Well, how about your team there — how have they been dealing with the additional stresses of the pandemic and providing care?

    Fehrenbach: Yeah, they have been amazing, and it's also been so hard for them. We had — in July, we had our first COVID case. We had managed to hang in there from March to the end of July, and we ended up having a number of folks, staff and residents, test positive. We had this small outbreak, and all that planning we had done to prepare for that moment, I think, really was able to limit the extent of it. And everyone experienced mild symptoms, and we were grateful for how it all went once it started. But I know that, in so many ways, all of the staff — all of us are still recovering from that experience.

    From the worries that they had for the residents, with all of their vulnerabilities, and then this new layer, which I think we don't often experience, which is worry for each other as staff. That feeling of being an essential worker — them showing up day after day to provide this care, and maybe realizing more what the risks are or what's at stake.

    So we've made, in response to that — we've always had, I think, a pretty good staff support, like, array of services, but we've really tried to beef it up in response to the pandemic in general, and specifically, the outbreak that we had in July. So, increasing access to therapy or coaching for our staff, that's something that we have made available to them, and we've had some self-care workshops. So, today, this afternoon, we're having a small COVID memorial in our garden. Because I think we've realized that part of what is really helpful to staff is just chances to grieve and feel sad and feel the loss — both of people in our community and the loss of our usual ways of going about the care we provide.

    Fluker: I think that grieving is really important, and that's something that many of us are doing right now. But the other side of grief, you know, is hope. And so, I'm curious to know — where have you found moments of hope since March?

    Fehrenbach: We have found so, so many — so many little moments of hope, and I'm really grateful for them, because they kind of make the rest of it all possible. I was thinking about this, just reflecting on, where are those little — where have sort of the flowers come through the cracks in the sidewalks, you know? And I think seeing the perseverance of staff and residents constantly gives me hope. Just the way everybody has leaned into it and tried to make the best of it, and the little ways that — and particularly, our staff is so creative with trying to still have joy in each day.

    We always have an annual memorial service at Joseph's House to remember the folks that have passed away in the previous year. It's always in May or June, and this year, we tried to recreate the ritual. We had some folks on Zoom and some folks in person, socially distanced in our garden, and we tried to do the same routines and the poems and the readings that we would normally do. And we got a little stuck at the end, because what we normally do is hold hands and we sing a favorite song together as a community. And one of our service year volunteers — she had the idea that we could all hold a string instead.

    So, there would be this really long thread connecting all of us in the garden, and we would hold on to that instead of holding hands, and that would be the COVID-safe way of recreating that ritual. And I swear, like, in that moment, I felt so much hope restored from months of COVID planning and worry and anxiety. And I thought, “This is what we need, this type of creativity” — whether it's adapting the care we provide, or just figuring out how to interact with each other, I was like, “We can do this.” It just takes creativity and that sense of digging into the complexity of it as opposed to just saying, “You know what, we can't connect the same way anymore.”

    Fluker: I think that — as you talked about everyone in that circle holding the string together, and there was, like, this big string that was unbroken, everyone feeling connected, everyone feeling accountable to each other, everyone feeling a sense of hope — I'm led to ask you, like, in this health care ecosystem that we have, in which we're all connected, how do you think academic medicine and health care providers, in general, can be more attentive to the population that Joseph's House serves?

    Fehrenbach: I've had so many interested, devoted, curious medical providers. And especially residents and medical students that want to know about how to give good care to vulnerable people. And so, I know the interest and the curiosity and the commitment is there, and — so, to think about, “What else is needed?” and I guess it — it makes me think of this idea of narrative medicine, that idea that the way people imagine or perceive their health is so important to providing them care. And that storytelling and sort of integrating elements of different, like, humanities disciplines, that that can really help us understand health in a more holistic way, and that that can help improve health outcomes when we're working with patients.

    Fluker: Ms. Fehrenbach, thank you for joining us today on “Beyond the White Coat: Making the Rounds.” We really appreciate the work that you and your colleagues do at Joseph's House to not only provide compassionate but also creative care to the folks in our community in most need. Thank you so much.

    Fehrenbach: Thank you.

    [End of Audio]