Always More to Be Done

A Piece of My Mind :By Ramya Sampath

The first thing I noticed walking the halls of Pallium India, a hospital-based nongovernment organization dedicated to improving access to palliative care globally, was how the heavy ambient humidity of Kerala was somehow neutralized by the cool pistachio walls. In US hospitals, walls are often neutral, inoffensive shades of tan and cream. Here, however, the pistachio wall color with its matching nylon curtains seemed to actually soothe. Unlike the persistent, beeping monitors of more technologically sophisticated health care settings—sounds that can interrupt and chafe the delicate sleep of patients—at Pallium, the only constant sounds are those of the lulling fans overhead. Their whirring creates comforting white noise that focuses the conversations and interactions that happen under them.

One morning during my year at Pallium as a research fellow, I joined inpatient rounds alongside its usual attendees—nurses, physicians, social workers, and a gaggle of trainees and visitors from all over the world. We moved together slowly in and out of the rooms with billowing curtains, seeing patients with advanced cancers, neuropathies, and spinal cord injuries. The team entered each room and immediately sat down on any available surface, ready to listen attentively to patients’ and families’ experiences. Lost in the curls and licks of Malayalam—a language close to my mother tongue, Tamil, but different enough that I struggled to understand the words let alone their meanings—I paid close attention to each patient’s face, body language, and surroundings.

We entered a room at the end of the corridor. I heard some of the details—name, diagnosis, and key aspects of the medical history—but I froze when I saw his face. His eyes, even in his delirium, were piercing, particularly under the thick, elegant arch of his long eyebrows. The resemblance to my father was uncanny. He was younger, and his frame was smaller, malnourished by circumstance and disease. But there were similarities I found to be unbearable: the ashen color, the particular way their shoulder bones seemed to poke through their skin, the shape and texture of their knuckles, but especially the way their robust eyebrows framed their sunken, pleading eyes. I found myself weeping in the back of the room as I watched this patient gasp for air.

How many times my father had also struggled like this. How many times his orb-like eyes pierced the stale stillness of hospital air, afraid of what was to come. I left the room quickly, unable to shake the feeling that I was seeing my father again, watching him suffer again.

My father immigrated to the US from India in the mid-1970s, eager for the dynamic life offered in Silicon Valley. As a silicon graphics engineer, he rose to prominence through long hours and limited sleep, believing that classic immigrant success narrative—with hard work, anything is achievable in America.

And then his health started to decline, beginning with hypertension and rapidly progressing through cardiac disease, diabetes, necrotic foot ulcers, and end-stage kidney disease. He was deemed not to be a candidate for a kidney transplant, and so for 13 years, he spent 12 to 16 hours a week receiving hemodialysis and nearly double that time recovering from the sessions. As he aged into his 50s, his life was structured by dialysis and managing his health, forcing him to replace the work that had given him purpose with a full-time commitment to managing numerous medical appointments on top of dialysis. It seemed like he was seen by nearly every medical specialist imaginable, yet his quality of life progressively worsened. He developed severe neuropathic and musculoskeletal pains in his back and hips. His skin itched incessantly, and his swollen belly compressed his lungs, compromising his already tenuous sleep. His vast assortment of physicians prescribed him an even more vast assortment of medications, none sure of the exact etiology of his pain.

Despite his hesitancy to take opioids, my father agreed to wear a fentanyl patch, a sign of how desperate he had become. Yet his severe pain persisted despite the pharmacopeia that covered every surface of our kitchen table. All his conditions lay in the realm of chronic, incurable diseases, and it felt to my family that as he grew older and frailer, his physicians became less interested in thinking through his medical problems with him.

Moving had become torture for him, and during the final weeks, he was howling and pleading with God to end his life. When his pain would momentarily subside, he would whisper soothingly to his legs, trying to convince them to cooperate. I called one of his physicians in desperation, exclaiming, “He’s not able to sleep. He’s not able to eat. He’s literally asking to die because of the pain!” The doctor coolly replied that he already had a fentanyl patch and gabapentin. “He can take some Tylenol if he wants to try that. That’s pretty much all we can do.”

We only learned about palliative care during the final week of his life, when he was hospitalized for sepsis. Drifting in and out of consciousness, he writhed in pain in the intensive care unit. A few days before he died, the inpatient palliative care team was consulted, and they helped my family understand what could be done to manage the pain and help keep my father comfortable. He rested peacefully those last few days. When he died, we still did not understand his pain or where it came from, but we knew he was finally free from suffering.

For weeks after my experience with the patient at Pallium, I heard my father’s suffering in every patient’s voice. Perhaps it is obvious that I would be reminded of him in a setting with so many patients experiencing advanced illness. But it was more than that: I was surrounded by constant reminders of what he did not have until the end. Joining Pallium’s staff as we wound up narrow paths into mountainous terrains and down into the alleys of coastal fishing towns to visit patients in the far reaches of southern Kerala, observing the skill with which this multidisciplinary team helped patients unravel the diverse sources of suffering in their lives, I witnessed how much good can be done through an inclusive vision of who could be a palliative care patient as well as what constituted care. I found myself in awe of the work I saw, yet I was also filled with deep sorrow and regret. If only my father had been referred to palliative care sooner. If only we understood how much could be done for someone with an end-stage illness to improve quality of life. If only we didn’t treat an end-stage illness as though it were the end of our ability to help.

There are times I feel that I will never be able to come to terms with how much my father suffered, that I will never be able to unsee his darkened eyes, fatigued by the kind of pain that pierces sleep, the kind of pain that makes a man plead for death in front of his family. However, my experience at Pallium helped me see my father’s pain not as unique but rather as another unacceptable instance where more can be done.

As I learned more from Pallium’s patients and staff and as my sorrow sharpened my vision, my questions too transformed: What does it mean when physicians take suffering seriously, no matter its etiology? What does it mean to look at someone who is suffering and keep looking, even when they have been told, “There is nothing else to be done”?

A few months before I left Kerala, my Malayalam had improved enough to stumble through basic conversations. I met a patient with metastatic cancer, who was still experiencing intractable pain even while taking a morphine dose 10 times greater than what my father had received. The patient’s pain was refractory to everything Pallium had tried, but they were going to keep trying. I expected to meet someone frail, haggard from pain and disease. Yet this patient was cheerful, with lustrous caramel skin that suggested a vitality unknowable through the medical records. The patient’s eyes sparkled, and while uncomfortable due to the pain, felt that Pallium was home. Taking my hand, the patient said joyfully, “No matter how bad I feel, I know there are people here who will go through it with me.” Then the patient whispered intently, “In this life, there is nothing greater than relief from pain—the experience of relief, there is nothing else like it.”

In health care, we often seek absence—the absence of disease, absence of pain. When rendering a patient disease-free or pain-free is not possible, the medical system sometimes falls short. My time at Pallium showed me that the absence of pain is not merely an absence of a negative feeling—it is the presence of relief. When we suffer, not only do we seek the absence of suffering, we seek the presence of comfort, the presence of solace, the presence of those willing to sit with us in our suffering. We live in a time of unprecedented technological potential to analyze, understand, and to cure diseases long thought incurable. But even in the absence of a cure, there is always more to be done.

The writer today tweeted 

Ramya Sampath@ramyasampath0
I’m so grateful to share my writing vi

exploring the work of

, how it helped me understand my father’s end-of-life care, and what it means to take suffering seriously in medicine. Always More to Be Done ja.ma/3qhmu0T

Always More to Be Done—The Presence of Comfort in Patient Care
In this narrative medicine essay, a medical student recalls discovering the power of meaningful palliative care, contrasting patients’ relief from suffering through caring and comfort with her…
Section Editor: Preeti Malani, MD, MSJ, Associate Editor.

Corresponding Author: Ramya Sampath, MS, University of Rochester School of Medicine and Dentistry ([email protected]).

Additional Contributions: I thank the patients and staff of Pallium India for sharing with me their homes and their stories. I thank my mother for granting permission to share my father’s story. I thank M. R. Rajagopal, MD, chairman, Pallium India, for modeling care beyond cure. I thank Timothy Quill, MD, Palliative Care Program, University of Rochester School of Medicine, Rochester, NY, for encouraging me to share this piece.

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