By Aldis Petriceks
The Oft-Unseen Fruits of End-of-Life CareUploaded: Sep 11, 2018
The following essay is a modified version of a piece titled, "Compassion and the Uncertain Caregiver," which was recently accepted by the medical journal, Palliative and Supportive Care. The version below contains edits to the original, submitted version, and does not represent the final version of record. Moreover, all individuals mentioned in this piece have had their names, backgrounds, and identifying details altered or removed in order to protect privacy.
“What am I doing?” I wondered, restless in uncertainty. It was four in the afternoon, and the room was illuminated by the French doors opposite my chair. The walls, with their yellow-green hue, reflected sunlight onto the clock, the picture frame, and eventually toward my squinting eyes. There was a revealing nature to those rays: clarity and brightness, a foil to my doubtful self-inquiry.
The room was radiant, as were all the rooms in the hospice facility—though the “facility” was, in truth, a house: located in a residential neighborhood, decorated in a peaceful, modern style, with big French doors in all its rooms. Most of the residents had just weeks to live, having arrived at the house for round-the-clock nursing; visits from the palliative care physician; meals, medications; and a peaceful place to spend one’s last days.
I was sitting in the yellow-green room, holding the hand of a patient beside me. I remember her as Laurel, for the plants which pressed up against the windows near her bed. (Her real name, background, and identifying details have been altered for privacy.) Laurel was in her early sixties, less than five feet tall, with wisps of hair floating as if carried by the light.
Some years before she and I met, Laurel developed a malignant tumor which eventually spread throughout her body. When it came time to finally enter hospice, she was in need of rest. She wore a forceful grimace, as if the muscles of her face were crashing into one another. And every twenty minutes or so, she would endure brief, near-imperceptible seizures, managed through liquid doses of lorazepam. While Laurel slept through these seizures, thanks to effective pain management, her unconscious face bore a curious blend of strength, dignity, and unease.
As a hospice volunteer, I had the duty and privilege to sit with patients like Laurel. Oftentimes, these patients would be conscious, communicative, and in need of a listening ear. But equally often (if not more so), patients spent their final weeks, even months, in unresponsive rest. These were, typically, short-term residents—and Laurel was one such patient, with that sunny afternoon being our only time together. As with all patients, I cared for her diligently, and I treasured her deeply.
But what was I doing? The question seemed out-of-place, yet I was asking it nonetheless. It was the center of an ongoing, implicit dialogue—one which I had been having throughout the shift; one which challenged my very understanding of caregiving and its goals.
Five o’clock. The seizures had quieted. If one could have painted a portrait of the room—with its calming walls, its large windows, its dimming rays of light, its silent occupants—it would have been a sad, yet beautiful work of art. Yes, someone was dying in there. Yes, that someone had lived a life well-acquainted with suffering. But that someone was also being comforted with a human compassion, as clear as the fading light which had once warmed the bright afternoon.
Yet what would that portrait miss? Deep down, beneath my compassionate exterior, doubts were festering: Did my presence have any real impact on Laurel? Did her lack of consciousness prevent her from perceiving my compassion? Did my care really matter? Most of all, What was I doing?
I did not like these questions, but I could not deny their existence. I had no such difficulties, however, while serving the conscious, verbal patient. There, I could hear the patient’s calming voice, see his smile return, and take pride in my service. I could join in with his existential sufferings, allowing expressive empathy to flow between us. The fruits of my care were, in these cases, clear and articulable.
Indeed, medicine is ripe with such instances of concrete reward: the oncologist guides a patient through illness, to a life free of cancer; the orthopedist returns a woman to strength and mobility. But so often while caring for Laurel, the fruits of my care were intangible. I felt like a mere presence, unable to measure the impact of my care. How could I know if my hand-holding brought comfort, or if it was even perceived?
Quarter after six. I left the now-darkening room, and walked to the kitchen for a drink of water. I ran into Jean, one of the nurses, who had just come out of the staff office.
“How’s it going in there?” she asked, with a tone that spoke to my struggles.
“I guess I’m feeling a bit defeated. You know Laurel: there’s something so expressive about her, something so deeply human. But with her being unconscious and nonverbal, I can’t seem to gauge what I’m doing for her. I have no idea if I’m making a difference. I worry that… that my caregiving doesn’t matter.”
Jean paused for a moment, slightly confused. I thought she might be upset. But then, her response was doubly perplexing: “Have you ever seen that romantic comedy movie, Fifty First Dates?”
“I have,” I responded. (Though I’d always wished I hadn’t.)
“The woman has some crazy amnesia, right? And then Adam Sandler has to make her fall in love with him every day, even though she’s going to forget that he exists the next morning. She never remembers anything he does for her. But you know what? He realizes that those moments, where he’s doing all those crazy things which she’ll never understand—they matter. The moments matter because the woman is real, and the man’s love is real, regardless of any witness or reward. Those are real moments, and Adam Sandler understands their significance, long after the girl has forgotten everything.”
I stood silent, mostly astounded to hear Adam Sandler mentioned in the context of hospice care. I took a final drink of water and ambled back to the room, more confused than uneasy. Yet as I sat there, by Laurel’s side, I wrestled with Jean’s words. And at some point in the darkening night, I saw how wise they were.
Throughout my early forays into hospice volunteering, I would enter a patient’s room with a simple goal: to provide comfort and compassion at the end of life. Yet my mindset was not without issue. My intentions, for instance, were rather pointed towards objectives, not people. I was approaching my care with an inward gaze, fixated on my efforts and outcomes. I wanted to bring comfort, but had forgotten that people were the true reasons for my comforting care.
Deep down, I wanted to validate my time and energy—to know that my presence was not in vain. But how could I measure the impact of an attentive ear, or an empathetic touch? Even for the most eloquent and lucid patient, these efforts were immeasurable. My goals were noble, therefore, but my mindset narcissistic.
Jean’s pop-culture reference reminded me that compassionate care is not always tangible in its impact. Objectives, goals, and results must always be evaluated in medicine; but our most important outcomes may not speak for themselves. Much like Laurel’s childhood expressions, the most human outcomes may be inarticulable, intangible, yet unmistakably present.
It was half-past seven when I left the house. Laurel passed away just a few days later. Although I would return the following week, there was now a metaphorical river running through the scene: I entered that room again; but it was not the same room, and I was not the same person. I once believed that I was the protagonist of my caregiving, comforting patients with selfless and laudable compassion. But in truth, my compassion did not matter in and of itself: it was only made real, made to matter, in the defining context of other human beings.
What did I do for Laurel, in those brief hours we shared together? What was the value of my care? Amidst the all the ambivalence of caregiving, amidst all my uncertainty, Laurel brightened my darkness like light through French doors. I remember her, laying on her side as the daylight ended, the image of peace embodied in her face—the tired soul had found rest. This was real, this is what mattered. This, is what I was doing.
Author Disclosure Statement
All identifying features and background information have been removed or deliberately altered for all individuals mentioned in this essay. No competing financial interests exist for the author.