Learning From End of Life Care Workers Now and After COVID-19: Insisting on Structures for Grief and Time
Erin Segal, publisher at Thick Press, interviews Rachel Kauder Nalebuff, author of Stages: On dying, working, and feeling, about grief, healthcare, visions for a more caring world, and books as monuments.
—
Erin Segal: It was just about two months ago that we published our conversation on Medium about the connections between Stages: On dying, working, and feeling and the Green New Deal. Since then, so much about our daily lives has changed. Every moment is infused with a sense of urgency, but I’m hoping we can use this conversation to slow down, to feel, to imagine, and to learn from what’s already in place. So, can we start with death? Because our culture’s avoidance of aging and dying is a major theme in Stages—and now suddenly the whole world is confronting death. What are you thinking about all this today?
Felix Gonzalez-Torres, Untitled (For Jeff), 1992. Billboard, dimensions variable. © The Felix Gonzalez-Torres Foundation. Courtesy of Andrea Rosen Gallery, New York.
Rachel Kauder Nalebuff: As one art therapist told me in an interview for Stages, “We hurt in community and we heal in community.”
One aspect of this crisis that’s so hard is that it seems impossible to grieve together. So we are suspended in collective grief limbo. But we would feel less adrift if we could learn from what end of life care workers know from working with death every day. To write Stages, I spoke with a broad spectrum of people who work in a nursing home: social workers, hospice nurses, engineers, dietitians, clergy, cafeteria workers, and housekeepers. Again and again, people said that the most important way to combat the psychological toll of working with death was to take time to process their feelings.
This sounds straightforward, but under our current systems, it’s not. When healthcare is driven by the bottom line, as opposed to care for patients and its workforce, hospitals cut costs by understaffing their facilities. It takes an enormous amount of advocacy to have protected time to grieve. Similarly, on a personal level, in a society driven by production and capital, it takes an enormous amount of fortitude to slow down and feel.
I wonder (and hope) that our current crisis could be the tipping point for shifting our country’s relationship to death and grief. Or, to put it another way, I’m worried that if we don’t process this level of death—and news about death—differently, that we’ll fundamentally dissociate and lose some aspect of our humanity.
Since the advent of war photography and the beginnings of the 24-hour news cycle, critics like Susan Sontag have worried about the “anesthetizing” (1) effect of mass media. Now that the internet is the only space to share news about loss, we have to really confront our tendency to compartmentalize our feelings when we read. People are learning, now on a daily basis about someone dying in the form of a post online. Maybe, if you’re like me, it’s nestled between a video of a dog and a paid post for vegetable broth. With one click or a swipe, it’s almost like it never happened. It’s hard to register how these moments take a toll on us because they are so fleeting and frequent. Freud called this condition melancholia: when we experience loss but it’s not acknowledged, so we can’t move through our grief.
For a lot of young people who aren’t religious, we have few structures in our lives that insist on us taking up time and space for grief. This is part of why movements like Black Lives Matter are so important. We need more imagination and demands around grief. We need to rebuild our capacity to grieve.
A knock on the door was a performance I made in collaboration with choreographer Rachel Bernsen, composer Coleman Zurkowski, and the staff of a nursing home that formed—through music, sparse language, shared breath, and group movement—a living, breathing vessel for mourning. Stages chronicles the challenges I faced making it, as well as how the process expanded me. I hope peeking into the process invites readers to also reimagine the role of grief. It’s easy to feel powerless right now, but this is one thing we as cultural workers are uniquely suited to do. This work is needed and will be needed for the coming years.
ES: What would a healthy relationship to grief look like right now?
RKN: Every day in New York at 7 pm, people clap for our healthcare workers. Why isn’t there an equivalent for grief? I suspect it’s because it might be dangerous. Grief is intertwined with believing in our interconnectedness. As a social worker in the nursing home told me, “Grief is the other side of holding something dear.” If we did collectively grieve for people who have died—people who are disproportionately Black and brown, and who were forced to be exposed for economic reasons—it would entail acknowledging, in an embodied sense, the humanity of a sector of society that has been rendered invisible. It would entail acknowledging how we are complicit in upholding punishing working conditions and that sense of invisibility, because the alternatives require effort and political change.
ES: I want to pause for a second to sit with the heaviness of being complicit. I feel this very deeply.
RKN: Man, thank you for pausing. I feel like that’s the lesson. It’s happening right here. And I’m learning from you.
*
If we did that, if we collectively acknowledged the humanity and right to survive that everyone deserves, I think we would all be enormously angry. And it would be dangerous. Kenneth Foote, who studies memorials after tragedies, writes that the American landscape uniquely suffers from the belief that “acknowledging the darker side of violence will detract from society’s positive and heroic accomplishments” (2). When we do memorialize this moment, it has yet to be determined how we will remember what happened, and how we will want to believe we behaved. Will we memorialize these losses as inevitable and tragic, or will we acknowledge the people who died as victims of the state's failure to act and protect people? This really depends on how we grieve and share our pain.
ES: With respect to accounting for loss—I’m wondering what sorts of starting points you encountered during your time at the nursing home, talking to staff and observing the day-to-day happenings. For me, it feels hopeful to see existing systems—like the meal program at the senior center where I practice social work on Mondays—expand and stretch to meet growing needs. I love that we don’t have to reinvent the wheel. Yes, our safety net is fragmented and frayed, but it’s a starting point. It’s something to build on.
RKN: What would it take to view feeling feelings as a part of healthcare work? What would it take for our healthcare system to view the health of its own workforce as the foundation of medicine?
While we work towards major healthcare reform, we can start with smaller pieces.
Grieving circles are one example of an existing structure we could learn from and better support. After 9/11, staff at the nursing home where I worked gathered in the chapel and formed concentric circles to hold space for grief. They held another circle after the flood in the Philippines (many of the staff are Filipino). Informally, the nursing home invited staff to circle together after residents died. But in reality, staff were too rushed to come together and circle, especially given the regular nature of death during the workday. Ultimately, this is because, under our current healthcare system, the mental health of healthcare workers doesn’t translate to a line item on a medical bill.
But right now, hospitals, in an act of unprecedented concern, could offer paid grief breaks, in the same way that they offer paid lunch.
I’m thinking about the doctor in Queens who had 13 patients die in their care last week. No one should have to be their 14th patient—not because that doctor isn’t competent, but because that doctor needs time to process that loss.
ES: Stages insists that we can learn from looking at practices and ideas that already exist in end of life care communities, but remain hidden from view in most other parts of our society. What did you learn from more looking?
RKN: Part of what I learned while writing Stages is that we can draw parallels between the world of the hospital and our personal lives, since we are operating under the same value system. By examining the elevated arena of life and death, in particular, our cultural fault lines become more clear.
I believe the exact same concerns we have about healthcare workers’ resilience apply to our lives, too, even if it’s more subtle:
How can we insist on taking more time to feel?
How can we insist that feeling is work, and is essential?
As in the case of healthcare workers who need support for grief, these questions shouldn’t be up to individuals to have to ask. We need protection for grief, among the many protections that aren’t in place for most Americans. I don’t know how to get there, but I know this has to start with us believing that taking time is essential.
ES: What would it look like to insist on our spiritual health?
RKN: Imagine writing to your boss saying: “I’m going to need to take tomorrow off to tend to my humanity, and make sure it’s intact for my community.” I would feel insane doing this! When in fact it’s our culture, and the worship of work I’ve internalized, that is insane.
If you have a certain kind of stable job and economic security, maybe it is feasible to ask for a mental health day. But still, it would come at your own expense, and this flexibility isn’t equally distributed. (Here, I’d like to point people to a book you recommended to me, Kathi Weeks’ The Problem with Work, which traces our historical failure to equally distribute free time to people across classes. Thank you Erin!)
We’re undergoing a shift in consciousness in this country towards believing that healthcare is a human right. We all deserve to survive, yes. But this has to be just the beginning. We also deserve to survive as human beings. And if time—time for grief and joy and processing every feeling—is what keeps us human, then we should view time as a human right.
This is going to be my next t-shirt!
ES: In Stages, you interviewed, among others, housekeepers and a nursing home cashier clerk and nutritionists and social workers—and I've been worrying that those workers do not and will not have the space not only to grieve the loss of their clients, but also to process their anxiety about potential loss. About the potential loss of their clients, their loved ones, and themselves. Given everything you've learned about death and resiliency, how will we witness and hold all that anxiety?
RKN: To combat anxiety, our healthcare workers need to trust that they will be protected. Now, and after the trauma they live through.
Unfortunately, it really feels like we are giving healthcare workers every reason to doubt. Across the country, right now, hospitals are cutting costs by laying off staff who don’t work in COVID response (43,000 healthcare jobs were lost in March! This includes many nurses who could be trained and deployed elsewhere). As Naomi Klein has pointed out, the fact that our healthcare workers are wearing trash bags to protect themselves perfectly captures how the system treats its workers as disposable.
Yes, healthcare workers are protesting to get adequate PPE (personal protective equipment), and individuals are writing thank you letters and fundraising to cover meals for healthcare workers. But this is all so inadequate. Our demands and our responses are suffering from limited imagination of what’s possible.
ES: What possibilities are you imagining?
RKN: First, I want to say to anyone who isn’t a medical expert and feels like there is nothing we can do, we have to remember that our imaginations aren’t hampered by the seemingly immutable laws of American insurance and hospital infrastructure as they exist! The measures that have been most applauded—like consolidating private and public hospitals to operate as one system, or recruiting medical students in their last year of training to treat patients—were recently unimaginable.
So here are some “impractical” ideas, in no particular order of importance:
—The WPA emerged to create jobs in response to the Great Depression. We could immediately start training fleets of mental health counselors and social workers to provide support for healthcare workers and everyone suffering from lasting trauma. Like the BILLION dollars our government flooded into Boeing and airlines and banks, all this would create jobs. All this would sustain people who are already working, too.
—My work at the nursing home left me feeling like each elder care facility and hospital needs a "grief chronicler" or a "witness-in-residence." There is a natural human desire to tell someone about a person you know who died or a trauma you witnessed. Otherwise, you’re holding something inside you. I was hired via a grant from a forward-thinking academic therapeutic theater department (thank you Maria and Nisha at NYU!). But this could just be a position that’s built into a healthcare system that cares for its workforce. Of course, to be a fully responsible position, the grief chronicler would need their own witness!
—Okay. One practical idea because it’s too important. We need millions of more healthcare workers. Before COVID-19, hospitals, and nursing homes especially, were already understaffed to cut costs. New York state, for example, doesn’t have a minimum number of staff required for nursing homes. Everyone is overworked and underpaid, which leads to an enormous retention problem. We’re seeing tragic consequences of short-staffing nursing homes right now, because staff are rushing through all the precautions they need to be taking, which is part of why the COVID-19 death rate is so high. Even though Bernie is out of the race, we have to push for policies like his disability plan, which calls for training and employing more nurses, as well as compensating the 46 million unpaid home caregivers who are currently preventing overloading our hospital system even further, and who could provide more substantive care if more people could afford to stay home.
—We can contribute to the mainstream politicization of medicine, right now. We all have a stake in healthcare, whether we work in medicine or we are simply someone with a body that is vulnerable to accidents and illness and death. In France, doctors, in solidarity with the public, have been protesting in the streets since 2017 about Macron’s cuts to public hospitals. Could hospital workers in the US protesting that they won't work without PPE be the first step?
Healthcare workers protesting Macron’s cuts to healthcare, Paris, 2019. “TIRED HEALTHCARE WORKERS = PATIENTS IN DANGER.” Photo courtesy of AFP.
Current hospital protests in the US. Photo courtesy of The New York Times.
Could everyone involved in healthcare—from nurses to administrators to members of the public in solidarity— stand outside hospitals demanding that the state provide better economic relief and rent moratoriums so that low income communities aren’t stuck in a death trap in the first place? Could protestors outside hospitals demand for single-payer healthcare? (People are paying attention to insurance on the patient side, but healthcare workers need this protection too. Low-paid workers in hospitals and nursing homes are trapped in their life-threatening jobs because they still need their employer's health insurance. It’s much harder for them to risk their jobs and advocate for paid sick leave, because they have everything to lose.) Could we make all these demands not only because our health is interconnected—and therefore rests on the health of the most marginalized and of our healthcare workers—but also because healthcare is a human right?
In other words, healthcare reform should expand from being industry-specific, to become a movement that encompasses and challenges us all, like Standing Rock, like the Women’s March, the March for Our Lives, Black Lives Matter.
Stages: On dying, working, and feeling, by Rachel Kauder Nalebuff.
Excerpt from Stages: On dying, working, and feeling, by Rachel Kauder Nalebuff. Order a copy here.
ES: And one final question. You’ve talked about Stages as a kind of monument to care work and care workers. A celebration. How are you feeling about all that today?
RKN: I wrote Stages as a way to shift the balance of who is valued and who is visible. Care workers, especially end of life care workers, shepherd people through the most vulnerable passageways of our lives. And yet, where are ceremonies honoring their service? Where are their statues?
By sharing their words directly, and by weaving in my writing to form a lyric thread—held together by Julie Cho’s incredible book design that invites space and time in the reading experience—I hope that this work becomes something like a monument. I love how Julie’s cover evokes a monument in stone.
But I’m struggling with this intention, to be honest, because books, especially now, feel so private. And monuments, of course, usually function in public.
While writing the book, I kept coming up against the boundaries between public and private. Stages builds on a public performance I made honoring nursing home staff. I was frustrated by how that performance could only happen once, for the one audience who came and filled the Riverside chapel. At first, I fantasized about translating the show into a pageant that could be performed by end of life care-givers across the country! A book ended up being the most accessible, and even more honest way for me to manifest this kind of ritual experience.
Investigating new possibilities for what the public means, now that we can’t share physical space at the same time, feels even more urgent right now.
Even now, I think we need something we can lean on and cry into. We need something in the landscape that we can stumble across (albeit one at a time) that stirs something inside of us. We need something that gets us out of our analytic brains, and into our sensing bodies.
I am thinking about Félix Gonzáles-Torres’ beautiful billboard called “Untitled (For Jeff),” dedicated to the health worker who cared for Félix’s dying partner.
I am thinking of the patchwork quilt on Washington D.C.’s National Mall made by queer activists to memorialize their loved ones who died of HIV/AIDS.
I am thinking about all the bodega candles that people place together to form temporary memorials. In the absence of shared public space, can writing do something like this?
Can writing surprise us with a sense of collective concern and care, and invite us to participate too?
Can we cry into books and obituaries and personal letters, trusting that others have done so too?
Can language offer communion?
All I know is that the first way I feel anything—before our public health crisis and now, still—is by writing.
ES: And I by reading.
RKN: But I don’t know. I really don’t. I might be asking too much of language.
(1) Susan Sontag, On Photography (New York, Farrar, Straus and Giroux, 1977), 20.
(2) Kenneth Foote, Shadowed Ground: America’s Landscapes of Violence and Tragedy (Austin, University of Texas Press, 2003), 345.
—
Thick Press is a collaboration between Erin, a social worker, and Julie Cho, a graphic designer.
Rachel Kauder Nalebuff is a writer who works in oral history and performance. Her recent book, On dying, working, and feeling, is available now from Thick Press.