Celia’s House is the only nonprofit hospice providing end-of-life residential care for individuals in the Rogue Valley. The 12-room facility, which also allows family members to stay during their loved ones’ final days, is operated by Southern Oregon Friends of Hospice in Medford. Last month, the nonprofit received a grant from the OHSU Knight Cancer Institute to conduct interviews in Spanish with Latinx cancer patients to identify ways to better engage this community with discussions around palliative and end-of-life care. Dwight Wilson is the executive director of Southern Oregon Friends of Hospice and Celia’s House. Delia Hernandez is a board member of Southern Oregon Friends of Hospice and a health outreach specialist with La Clinica, a non-profit medical and dental clinic in Medford. They join us to talk about how they will use the grant and how to overcome the taboo around talking about death.
Note: The following transcript of OPB's Think Out Loud was computer generated and edited by a volunteer.
Dave Miller: From the Gert Boyle studio at OPB, this is Think Out Loud, I’m Dave Miller. We turn now to end of life care, and a gap that has been identified in the Rogue Valley. Southern Oregon Friends of Hospice, which is based in Medford, recently received a grant from the OHSU Knight Cancer Institute. The nonprofit will conduct interviews in Spanish with Latinx cancer patients. They want to learn how to better engage with community members around palliative and end of life care issues, and they hope to break through cultural and linguistic barriers on the subject. Dwight Wilson is the executive director of Southern Oregon Friends of Hospice. Delia Hernandez is a board member of that group, and also a health outreach specialist with La Clinica, a nonprofit medical and dental clinic in Medford. They both join me now. Great to have both of you on Think Out Loud.
Dwight Wilson: Thank you.
Delia Hernandez: Thank you.
Miller: Dwight Wilson first, can you give us a sense for the services that you provide at Celia’s House? This is the residential care end of life facility in Medford.
Wilson: We provide, essentially, end of life and hospice care within 12 beautiful rooms. We’re the only facility that is residential care licensed. Basically, people come to us, we care for them. Their families are able to be family members, not caregivers. And we will essentially care for people from the time they are admitted until the time they die.
Miller: How is the experience there, in general, different from that of somebody who is dying from a terminal illness in a hospital?
Wilson: Quite different. In a hospital, they’re focused on healthcare needs. They may have some dying people in the hospital, but hospitals are not built to care for dying people. And our whole focus is caring for dying people, and supporting the families of the dying. And we have volunteer support, we have excellent staff ratios, and our whole goal here is to meet the hopes and dreams and needs of those that we care for.
Miller: How are people typically referred to Celia’s House?
Wilson: A variety of means. We get referrals from discharge planners who see that they would be better cared for in our place. We have family members that might call us. We have referrals from social agencies throughout the valley. A wide variety of means our referrals come from, even La Clinica will refer from us from time to time.
Miller: Delia Hernandez, you are a health outreach specialist for La Clinica, a community health organization also based in Medford. Has that meant working with people who are nearing the ends of their lives?
Hernandez: Yes, it has, more so than I have in the past. I’m going out to a lot of patients that are not able to come into the clinic or have limitations.
Miller: Why did you gravitate to this work?
Hernandez: I don’t think I’ve gravitated to it, just like throughout the years, it just flowed me into that. I love working with that, and wanting to educate people. It’s such a hard experience, and in my own experience, it was hard. So I could just imagine somebody that has no knowledge of the health care system, how much harder it is emotionally, physically, spiritually, culturally.
Miller: When you say in your experience, what are you thinking about in particular?
Hernandez: My mother. During the process [of her death], because of her cultural background and the way I was raised at home, it was the expectation that her children were to care for if she didn’t have a spouse, or if the spouse was unable to. But because of my upbringing, my education, and my experience with the work, I wanted to let those professionals do their work, and let me just be her daughter.
Miller: So what kinds of conversations did you then end up having, specifically about that relationship that she expected, and what you thought would be best for you, and even for her?
Hernandez: My mom and I had a very open relationship the last three years of her life, where I could speak to her without her feeling like I was trying to be the mom and her the daughter. And I think it was because she was going through that process of the end of her life that we were able to have those conversations, and due to my experience and the knowledge I’ve gained through my career, I was able to talk to her as a daughter, as well as her taking appreciation in my knowledge of the work I do.
Miller: Did you see patterns that were familiar in terms of the conversations you’d have, or the issues that would come up with your mother, were those repeated in some of the dynamics you’ve seen in other Latinx families that you’ve worked with?
Hernandez: Oh, definitely. Just the language, the language itself. Not until recently has the word “hospice” been used in Latin America. I think it was the 17th century, hospice was more for the mentally ill. More like an asylum. Nowadays, more in city areas, they use the word hospice for palliative care. Whereas a lot of the people that are in this area are people that are from rural parts of Latin America that don’t have that higher education, and don’t know the language of the health care system. So they confused hospice with something similar to an asylum.
Miller: Which maybe has the wrong associations, both in terms of the reasons you’d go there, but also it could imply that you’re just sort of sending someone to an old fashioned medical jail, as opposed to a place where they’re going to be cared for?
Hernandez: Yes. Pretty much, you’re just sent there to die. No care. They’re not going to die with dignity, they’re just going to go there until they die and then lay him down to rest. That’s what people feel. I’ve had conversations with patients - I had one recent one that went through, and that was their concern. It’s like you’re coming in here to tell me you’re going to take my mom from her comfortable home to put her in a home that’s just going to let her rot and die? That was what the patient’s family was feeling.
Miller: When they arrived at this, the beginning of this conversation with you, thinking that, how do you proceed?
Hernandez: I give a definition of hospice, rather than just using the word hospice. And I give a definition of palliative care. Palliative care and hospice work together, and they’re sometimes thought of as the same thing, but there is a little bit of a difference. Just explaining to them, and listening to their concerns and their stories, and from there, going forward, what is it that you want for your family? What is it that you want for yourself as you’re going through the process of being ill, and then transitioning into the process of dying? But always putting the patient’s wishes first, and then because it always has to be with the patient wants. It’s their life.
Miller: Dwight Wilson, what exactly will you be doing with this small grant that you recently received from the Knight Cancer Institute?
Wilson: We are going to interact with the community, develop a set of questions that resonates for the very concerns and issues that Delia has articulated. We hope to have 8-12 family members or individuals who are yet basically are at the latter stages of cancer, and just ask them, what are their concerns? What are the barriers? What are some of the thoughts they might have to enhance people’s desires to receive the support that we and other individuals provide?
Our hope is to have open ended questions that will allow free flowing conversations, and from that, we’re hoping to pick up some themes and messaging from them that we will be able to use in a second grant that will enhance our ability to have the end of life discussion with this community.
Miller: So you’re actually hoping eventually to change your messaging, or create a slightly different approach based on what you learn from these interviews?
Wilson: Probably both. I think as Delia has mentioned, the end of life discussion in and of itself is difficult. And so the question is, will we get feedback that gives us tips on how to perhaps make that conversation easier? I mean we have a beautiful home. Does a beautiful home scare people off? They may feel that “I’m not good enough”, or we serve just rich people, or whatever the barriers are. So how do we communicate in a way that is holistic, and is all encompassing, and values the goals and desires of the people that we will be interviewing with?
Miller: Just taking a step back, Dwight Wilson, what was it that led you, and I imagine others, to seek this grant? What had you noticed that led you to say we need more information and we have a problem we want to fix?
Wilson: Two reasons. One the Rogue Valley, stereotypically, having that discussion, no matter what your cultural background is, is very hard. We find more often than not that folks just are not prepared for the experience of dying.
And then equally important, we know from who we serve we are not serving this community even close to what the needs are. So we want to gain some understanding about the messaging and, what are some thoughts on how to enhance discussion. And we want to learn about ways that we can be more open as to how we communicate our support and care? And we’re hoping that we will gain some knowledge from these interviews in such a way that we can perhaps enhance our capacity in both.
Miller: I want to zero in on the first part of your answer, because this was not simply about Spanish speakers or immigrants from Mexico or Central America. If I understood you correctly, you were saying that this is actually a Rogue Valley-wide issue. Not everyone, but that it’s not uncommon for all residents in the Rogue Valley to not want to engage with conversations about these issues. First of all, did I understand you correctly?
Wilson: Well, I have to be a little careful with that. I mean, it’s a nationwide problem to start with. I spent much of my professional career down in the Bay Area, and compared to the Bay Area, in general, we’re finding number-wise, the number of people that are actually having this conversation with themselves, their families and others, there seems to be less of that here than the Bay Area.
We’re trying to think of this conversation as a gift to yourself, to your family, and those around you, so that when the time comes that one is dying, it’s all of a sudden not what do you want, what are your desires, what is the support you need, and all the things that go with it. So yes, it is a Rogue Valley challenge. It is a nationwide challenge. And on top of that, it’s a cultural challenge. And really, we are prioritizing as an entity to try to enhance our capacity to meet those challenges.
Miller: Delia Hernandez, have you found that dealing with your mother’s death and finding support for her when she was dying from cancer, has that affected the way you now deal with your clients with your patients?
Hernandez: I think it has. I used to go in with a more clinical standpoint. And I’ve come to realize that what people are wanting is to have a companion, not a clinical person. And I outreach to people in that way, moreso like they’re my family. I talk to them like they’re my family. We use certain words that could make it be less personal in Spanish, because of our verbiage. So I just go in and I’m literally telling them that I’m gonna be holding their hands just like if I were their family, not like I was the doctor just telling them what to do, what they need to do. I’m taking into consideration their thoughts, their feeling, and bringing in all those emotions into my heart. I’m not just thinking with my brain, I’m thinking with my heart when I go into somebody’s home to talk about those things.
Miller: I can imagine that that’s really helpful and comforting for the people who are dying or for their family members. I can also imagine that that might make your job more emotionally difficult, because you’re becoming more vulnerable and giving more of yourself, it seems. Is it ever too much?
Hernandez: I don’t think it’s too much. Most of the patients I’ve worked with, almost 22 years of working in the medical field, have been the older and people who are on hospice. I’ve always seen people as my family. I’ve treated everybody the same. Before my mom died, it wasn’t as emotional. But after I experienced that, so close - I had my grandparents die as well, and I went through that process with them, but when I was so close, like my mom, it’s more emotional and it hits more close to home. And I think because it hits closer to home, it makes it easier for me to be able to emphasize and be more compassionate with people.
Miller: How much do you find that your job is really about working with or providing support to the family members of the people who are dying?
Hernandez: It’s like a 50-50. Like I said, they’re my family. So I take into account both sides. What are the needs of the person that’s going through the process of dying, and what are the needs of the people that are helping this person through that process, or seeing this person go through that process? I can’t say that I’m more so towards the patient or more so towards the family. But I could say I could go full-heartedly to both sides, and I could see both sides, just because of the experience and the conversations that I had with my mom, and having the conversations with the patients, trying to figure out what’s the best way to manage it.
It’s so hard to explain that personal touch. I see everybody as my family when I go in. I sincerely and genuinely take it to heart how they’re feeling. And it’s a part of me what they’re going through.
Miller: Not to oversimplify this Delia, but in some ways, you could view the project that you and Dwight Wilson are embarking on as ways to spread this newish idea of professionalized help at the end of life. Maybe more of an openness to dealing with this stage of life in a very clear, communicative way, as opposed to traditional ways of living and dying in other cultures, where families by necessity but also by culture, were maybe going to do a lot more. I’m wondering if you think there are also aspects of those traditional cultures that dominant society could learn from? I’m wondering about the vice-versa version of this.
Hernandez: I think what we could take in our culture here in the US, from those experiences that I go and learn and then educate other people, what we could learn is to be more compassionate, and be more real with people. Rather just going in and saying this is what we feel is good for you, it’s going in there and asking them what they feel is best for them. We tend to, in the culture here in the US, do “this is what we recommend.” Whereas in our culture, we want to hear you say what you think. And I think just saying those words, “what do you want?” is really, really important.
I think nowadays that we’re taking more into consideration, behavioral health, mental health, we’re more able to fill those gaps that may be 10 years, 20 years ago, were not being met because of our lack of awareness of emotional, behavioral, mental health.
This transcript was orgininally published by Oregon Public Broadcasting. Go to opb.org to listen to this episode of Think Out Loud.
