Possibilities at the Edge: David Fife on End-of-Life Comfort

Interview by Rebecca Crocker

David Fife is Social Services Director at Casa de la Luz Hospice. As so often happens in Tucson, where a good dose of “old Pueblo” homespun community persists despite rapid growth and sprawl, David and I have some common history that helped us ease into this conversation. Our daughters have shared classrooms and friends at TUSD schools dating back to 2009, and over the years we have collaborated for work related to end-of-life traditions and documentation. Our conversation took place as the Bighorn Fire, a wildfire caused by a lightning strike, spread across the Catalina Mountains north of the city. Only after David began to speak did I realize that I had scheduled our conversation about death and departure three years to the day that I held my own mother’s hand for her last breaths. It was comforting and enlightening to hear David’s wisdom as I moved through my memories of that day.

Rebecca Crocker: David, it’s so nice to hear your voice. The Bighorn Fire has probably had an immediate impact on your work. What has this experience looked like for you all at Casa de la Luz?

David Fife: We got word that there was a huge section on Catalina Foothills area that was going to need to be evacuated. It was a matter of us just trying to make sure that patients and families were safe and that they had a place where they could go. Sometimes we needed to help them get a patient placed in an assisted living home or a skilled nursing facility. A lot of times they were going with other family members in other parts of town or even just temporarily to a hotel, whatever people felt most comfortable doing. It was something that we prepare for, but then when you start to implement it, it moves very quickly.

RC: It must have been really challenging for you and your colleagues to manage the threat from the fire and then the threat from the pandemic.

DF: It was, because they had designated Canyon Del Oro High School as the place where people could go to be safe and to get some resources. But when you’re dealing with a very vulnerable population, that’s not an option, number one. And then if patients needed to go into care facilities, there are a lot of things to consider, because there are many facilities that aren’t allowing visitors. Those are very difficult decisions to make.

Through this whole pandemic, the hardest thing we’ve been seeing from families and patients is not being able to have that same connection, not being able to have the visitation. Then there’s the worry about how folks are being cared for and whether or not their needs are being met. That physical and emotional connection are just so important to our well-being.

RC: What kind of an impact does that have on your daily work, when that whole piece of social connectedness, often provided in part by the family and the community, can’t happen anymore?

DF: In many ways we are the eyes and the ears for family, and we are the connection between the patient and their loved ones. If the family is not able to go into the facility and visit, oftentimes it’ll be just our nurse or our social worker or chaplain who are able to make that connection. We get devices in when we can so that people can FaceTime with family and then it’s just being able to call family afterwards or while we’re there and say, “This is what’s going on” or “This is what we’re seeing,”  or “This is how your loved one is doing.” Just being that connection for them—it’s been vital.

It’s also made all of our staff get pretty creative in terms of how we provide care. The nurses will say, “The only way we know how to do what we do is by touching, by being in the same room and at bedside and assessing in that way.” They’ve had to be creative by doing things virtually, having a lot less frequent visits with patients and still providing the care that they know is really important to make sure that people are comfortable.

RC: The rates of infection and loss in Tucson haven’t been as bad as in some parts of the country, but how bad has it been being on the front lines here?

DF: There has been tremendous suffering due to the pandemic. Much of the physical suffering from the disease is well documented and it is devastating. But we have also seen the negative impact on families, friends, and communities because of the social isolation. When someone comes into hospice, it is not unusual for either the patient or loved ones to ask the nurse how long a person has to live. The truth is, that is something very difficult to assess—each person’s death is unique and individual, with many factors that influence it. But I believe the pandemic has been a significant factor in the dying process even for patients who have not contracted the disease. Patients in hospitals, skilled nursing facilities, and other care homes often are not allowed to have visitors due to COVID-19 restrictions, and this isolation, loneliness, lack of physical and emotional touch I believe has led to some people dying more quickly than they would have otherwise. I feel that some people die of loneliness more than anything else.

RC: How do you think, generally speaking, that practicing this work here in the Arizona borderlands is unique from other areas of the country, due to the geography, landscape, cultural context, or other factors?

DF: I was listening to an interview with Yo-Yo Ma and he talks about the “edge effect” in ecology that says that where two ecological systems meet, new life forms are created. He finds it true in music as well—when two different musical forms come together, new possibilities are created out of that mixture. What we do in hospice is come to terms with the reality that our life is limited, that our life is ending. I find that same creative potential and possibility is also there.

To do this work here in southern Arizona and along the border with Mexico, it very much is that same reality. Often times the border is seen as that unknown or that place of fear—that is how it’s talked about in the larger culture. But it’s this amazing boundary where worlds come together, where different realities come together, and because of that there are new possibilities and potential and creativity that never would be there except for the fact that they’re coming together at this place.

With death, so much of the time we deny that it’s there, we pretend like we’re not going to die, and we oftentimes live that way. I see that now when I feel like people are behaving a little recklessly with COVID-19 in our community. The number of cases is growing, and people are pretending like this just couldn’t touch them. But when we are faced with the reality that our life will end, we no longer can be in denial about it. We must get into a deeper relationship about what life is. I think it’s also true with the border. It’s so easy for people in other parts of the country to talk about the reality that they’re not living in. But here, we know it’s about relationship. Here, we know it is about the expression of cultures and music and faith and people who rely on one another and need one another. When we come to terms with that, the border is much more of an opportunity than it is something to either fear or deny as part of our life. I’ve known that reality of the border my whole life, going back and forth and having it be part of who we are. But this work in hospice has offered me that same gift in terms of my daily life.

RC: Beautiful. Thank you for sharing that. Speaking to you about your work in this way is what we call “occupational folklife.” Sometimes it may be more obvious to see traditions when we look at dance or crafts or other aspects of culture, but a lot of the same things apply when we look at people’s work. Are there certain words, turns of phrases, or customs that are particular to hospice work?

DF: We don’t really have much use for euphemisms and platitudes, because it can be a way of avoiding the reality that we are facing. We say, “Somebody is dying.” We say, “Someone has died.” We don’t say, “Someone is passing” or that they’ve “passed away.” Not infrequently we’ll go and visit somebody and we get met at the door by a family member and they’ll say, “You need to take your name badges off because mom doesn’t know that she’s dying and we don’t want her to know she’s on hospice.” We will take our name badges off, but we also tell them that we are never going to lie, and we will answer all questions directly. A lot of times families are just very afraid of talking about that truth. But unless you name it directly, you can’t talk to one another openly and honestly about those things that are most important. You never get to say “goodbye” if you are in denial that the goodbye will happen. You never feel the urgency to say “I love you” if you feel like you’re always going to have tomorrow to do it, or to offer forgiveness. We just feel like it’s so important to speak honestly and openly. For us to begin to use that language gives people permission to engage in it as well and to talk about those things that maybe they’ve been too afraid of bringing up in the past. If we’re able to be more direct about it then it allows people to honestly say, “I never wanted to say it, but it breaks my heart to think about saying goodbye.”

RC: What are the most important lessons that your work offers you or could offer those of us who don’t do your job every day?

DF: When you think about hospice, you think, “Time is very short and so we need to think more urgently about what we need to do or say or how we need to be.” The thing that surprised me is that hospice taught me to take the long view of things, to actually not be overly urgent. Because the truth is that everything is going to change, it always does. And we don’t need to be reactive to everything. What is most important really is spaciousness, to give ourselves room to feel what we need to, to be honest about what those feelings are, and then to be able to honor the relationships that we have and figure it out together.

RC: Do you have any moments, stories, people, experiences that jump out at you over the years?

DF: After I’d been a chaplain for a few years, I got called to an assisted living home and where an elderly gentleman was nearing end of life. And the room, which was not all that big, was filled with his wife, and children and grandchildren. I was asked to come and spend some time with the family and offer some kind of reflection and prayer. At some point, one of the workers came into the room and said, “We have a pie and some coffee. Would you all like to come out and have something to eat and take a little break?” The family has been in that room nonstop for quite a while, and the kids, of course, when they heard pie were completely elated and so they were out the room. The adults looked at me and I just sort of said, “It’s okay, I’ll sit with him if you want to take a break.” They reluctantly agreed that maybe it was a good idea.

I don’t know if you’ve ever sat with somebody as they’re nearing end of life, but people’s breathing changes and it’ll oftentimes be rapid, short breaths and then there might be some deeper ones and some pauses. It could go for many seconds where they’re not taking another breath. I oftentimes mirror that breathing and I will be on that same rhythm and I’ll find myself stopping when the patient stops. I was doing that with this gentleman, just sitting there and I had my hand on his arm and just breathing with him and he had that long pause and I paused with him and then he just didn’t take another breath. It was very peaceful. I just sat with him for quite a while until I was sure that that he had died. Then I got up and I went to the kitchen and I let the family know. I wasn’t sure what their reaction was going to be. They had been there for so long and I think that they wanted to be with him as he died. But they just kind of smiled. They figured that was exactly what he’d needed. They went in and spent time with his body. It was just one of those moments—it just was so beautiful.

There’s a beauty in death that can happen when somebody is supported and loved and cared for in the way that they need. There’s a healing or a wholeness that can happen. I feel like that’s what happened not only for the gentleman who died but for that whole family. They felt like they gave him what he needed, even the space he needed at the end to let go.

Cover photo by Sean Benesh

This interview was made possible, in part, through the Arizona End of Life Care Partnership, a growing network of organizations and individuals committed to ensuring quality of life at every stage through education, support, sound policy and choices. Since 2014, the Southwest Folklife Alliance’s End of Life: Continuum program has produced events, gatherings, films, and publications honoring the many traditions and practices related to end-of-life, grief, mourning and death in Southern Arizona’s folk, ethnic, occupational, faith-based and alternative communities.