On Life at the End of Life, companionship, and care.
By Elizabeth Jackson
Scroll through the spring course listings for the American Studies Department, and you’ll see titles that seem to fit squarely under the department’s suggestive but ambiguous name: “Race, Poverty and American Criminal Justice,” “The Problem of Social Class in Post-War American Literature and Culture,” “Equity and Access in Higher Education.” Eventually, though, you’ll come to an entry that seems to have little to do with America specifically: “Life at the End of Life.” Don’t we all, after all, live and die?
Broadly speaking, Life at the End of Life is about palliative care. The course has a traditional seminar component, in which students discuss readings on facets of care at the end of a person’s life and listen to guest speakers ranging from chaplains to physicians to English professors. Between two and four mandatory volunteer hours with palliative care patients each week complement these seminars, during which students are paired with one or two “long-term companions” receiving care at Terence Cardinal Cooke Health Care Center in East Harlem. Companionship this semester is mediated through Zoom, but in years past, students worked with patients at the facility. In addition to spending time with and providing individualized support for their long-term companions, students might be called upon to assist with general tasks in the nursing home, like distributing coffee or organizing entertainment.
More broadly, but perhaps more accurately, Life at the End of Life is about reconceptualizing relationships to ideas that scare and overwhelm many of us. Death. Illness. Autonomy. Spirituality. Care. Intimacy. It is about confronting these hard themes rather than avoiding them, as American society often suggests we do.
Most of the students and teachers I spoke with mentioned the stigmatization of death and illness in American society, with some comparing this stigma to attitudes in other cultures. Rebecca Yao, CC ’22, remarked that “especially in America, we don’t really talk about death at all. It’s kind of taboo,” an attitude that contrasts with her experience with family in Taiwan. There, death is “talked about a little more widely,” though even these conversations, she acknowledged, may not be sufficient to cultivate a sense of societal comfort with death.
Changing the way we perceive death may also involve changing the way our society and medical professionals treat the dying. Hana Ghoneima, the teaching assistant for the class, mentioned that in some cultures, there is a greater sense of community surrounding death and dying. She referenced a recent study of Kerala, India that found death to be, as she described it, a “communal, social thing. It’s not a medicalized isolation.” Ghoneima elaborated that “if a person is dying there, they’re not sent to a fluorescently lit room where they stay by themselves.” The patient doesn’t experience isolation as a default, punctuated by periodic visits; instead, they are enmeshed in a social fabric of friends and community workers, who offer prayer or food or companionship. She connected this community mindset to the discussion-based nature of the class; the format helps to drive home the idea that death must not be borne entirely alone, despite the tendencies of American health care and society. Nevertheless, the class does not completely nullify the sad connotations death still holds for many. Instead, Nicholas Kime, CC ’22, describes the ultimate takeaway from the class as “the ability to live amidst the discomfort and be okay with that.”
In addition to recontextualizing death, the class also calls upon students to consider different conceptions of care and the medical system. Kime commented that even though the medical profession typically prioritizes the extension of life at any cost, in a palliative context, such a philosophy may not be the best or healthiest thing for the patient, depending on one’s definition of healthy. Zoe Lin, CC ’22, further explained that compared to other areas of medicine, palliative care is much less concerned with diagnosing problems and much more about managing relationships between the patient and their loved ones. Palliative care professionals often deal in the unquantifiable: the emotions of patients and their loved ones, including grief. We often think of the ultimate goal of medicine as finding a “cure,” said Lin, but in palliative care, there typically is no cure. “The shift has been, let’s think more about healing—not just of the body, but also of relationships and their community. And do they feel like they have any regrets, and if so what can we do to maybe make amends?”
Lin emphasized the importance of a varied roster of healers in the context of palliative care, including chaplains and spiritual counselors. In one class, a spiritual counselor explained that the most important phrases a person can say to a palliative care patient are “Please forgive me,” “I forgive you,” “I love you,” and “thank you.” Lin asked the counselor what happens if patients or their families struggle to say these things so explicitly—in her own experience in Chinese culture, saying “I love you” can be unexpected. The counselors underscored that people may communicate these sentiments differently, potentially nonverbally; for loved ones and caregivers the task is twofold, both to identify and then interpret intimations of intimacy.
Care, particularly in the palliative context, is often found in simple acts, like remembering someone’s coffee order. Kime recounted his own experience working in-person coffee duty with a professional caregiver, saying that he would man the coffee cart while she told him the residents’ orders, which she knew by heart. The caregiver also brought a speaker, and she’d sing. “All these old people dancing, jacked up on caffeine with so much sugar in it,” Kime recounted. “And then this incredibly kind woman just singing so loudly, beautifully, dancing with some of the residents when they would come by.”
Part of caring sympathetically and effectively may also mean changing our natural responses to particular illnesses. Students are sometimes paired with long-term companions who suffer from dementia, and do not always experience reality in the same way as the students. One of Kime’s two long-term companions experienced severe dementia. Sometimes “you just need to, not play along, but entertain whatever they say and whatever situations and worlds they build for themselves,” he summarized. “That’s the world they’re in, and acknowledge that reality. And if you don’t, it’s going to be worse for them and for you.”
Sometimes, accepting the terms of his companion’s reality meant subscribing to outlandish premises, like a belief that she was on the run from bank agents. Never predictable, their interactions were defined by their variety, ranging from silly to poignant. One day, she might request that he write a letter asking the Pope to visit; another time, she spoke about being ready to die. “I didn’t know her well,” Kime remembered, “but the fact that she confided that in me. It’s so weird, like [a] handing off of responsibility, but it’s also so beautiful, in a sense.”
Dr. Craig Blinderman, who directs the course and Adult Palliative Medicine at Columbia University Medical Center, explained that reconsidering how we interact with dementia patients involves focusing on what this person can still experience rather than dwelling on the abilities and memories they’ve lost. He recounted a guest lecturer who encouraged students to observe what they were seeing without attempting to impose a cognitive frame on it. For example, students were meant to refrain from making value judgements or placing events in a a context of earlier experiences The exercise allowed them “to explore reality as it is without the filter of our cognitive functioning to give it meaning or provide it with a context and so on.” Blinderman pointed out that some people that work with patients with dementia might view the condition as a “terrible loss” and irrevocable fall from an “idealized state of human functioning.” But it’s perhaps more productive to focus on the things these patients can experience, which are often more sensory than higher-order cognitive.
“What is that like for them, to feel the water touching their face, to experience chewing or to have a sensory experience of the sunlight hitting them? And what might that bring up for them? The memories might be shifting or disappearing or fading, or they might be mixed and hard to muster, but what else is there?” Blinderman asked.
The long-term companion structure lends itself to developing intimate relationships over short periods that are nevertheless unlikely to persist for years into the future. How do volunteers and caregivers strike a balance between the opposite imperatives of developing empathetic connections with patients, while preserving the emotional distance required to continue working without consistent pain? Lin commented that doctors are often trained to view their patients as diagnoses and “bodies that they need to heal” before engaging with them emotionally, implying that the secondary nature of the emotional connection may help some doctors to bear the loss of their patients.
In addition to maintaining professionalism, though, some shared that caring effectively for patients requires being fully present to every emotional moment. In discussing his own weighing of emotional intimacy and distance, Blinderman described a “flow” between home and work, and between tasks at work rather than the establishment of discrete boundaries. “I want to be completely engaged in that moment when someone is sharing something that’s tender or difficult or challenging. And then the next moment it may be something else. I may be talking to a nurse about getting the right pain medication dose, and then I’m going to be in that moment, right? And then the next moment might be reading a novel at home and being in that moment.” Phrased in terms not dissimilar to the strategies students in Life at the End of Life learn for patient care, Blinderman’s approach for himself is also one of accepting reality by allowing it to “flow through you as opposed to creating a sense of distance.”
One of Life at the End of Life’s central messages is that care—like death, like life—should be everyone’s concern. The responsibility to care falls not only to doctors or chaplains or family members but also to strangers who, in caring, become friends; it falls to listeners, to talkers, to those of us who can. One of the last memories Kime shared with me was of standing in front of a window with his long-term companion: “[It] looked straight onto a brick wall, and she was like, ‘Nicholas, look at the birds!’ And I was like, ‘Yeah, the birds!’ She goes, ‘Look at all of them,’ pointing at her church.”
“It was so sweet,” he reflected, “sharing that with her, her joy from living in her reality, where she was able to look outside of that window into a shaft and then make something really beautiful.” And as we go on, there is suffering. There is death, and grief, and perhaps even forgetting. But there are also brick walls to be made into birds, dances around coffee carts, and tenderness—to be given and gotten and held fast in our hands.