By Dr Ramanan Rajagopal & Dr. Mohamed Nidhal S. – “I am reminded that the role of a palliative care doctor extends beyond medicine. We’re here to guide families, to bear witness, to help them find clarity amidst the fog of terminal illness.”
Introduction
Mr. R came to our emergency room in the stillness of the night, desperately fighting for breath. It was 1 a.m., and the air was tense as he battled the effects of an aspiration that led to a hypercapnic arrest.
We rushed to stabilize him, intubated, and moved him to the ICU. He was 55—a father, a husband, a man whose life was tied closely to his family. Alongside him, his wife waited, and his son’s friend, who had rushed him here, looked on anxiously. As I spoke with them, I felt the weight of their concern, their fear, and their confusion.
In the quiet of those early hours, I sat with Mr. R’s family and started explaining what we were facing. Two years ago, he’d been diagnosed with bulbar-onset motor neuron disease (MND), a condition that was quietly, relentlessly taking away his ability to speak, swallow, and eventually breathe. Yet, it became evident that the full impact of his illness hadn’t been explained to them, or perhaps it was simply too difficult to process.
I could see they were only beginning to grasp what this diagnosis meant. At that moment, it wasn’t just about treating him; it was about helping them understand what lay ahead.
The Struggle to Come to Terms
I watched over Mr. R during those initial days as he fought off aspiration pneumonia, which would need several days of ventilator support. His son, who lived abroad, arrived two days later, carrying the heavy burden of navigating his father’s care.
Together, we discussed options that might ease Mr. R’s suffering and provide stability—a tracheostomy to secure his airway, a PEG tube to ensure he received the nutrition he needed.
These decisions weren’t easy. His son was torn, understandably hesitant, as we discussed the PEG tube.
They ultimately decided to wait on that, preferring to pursue it once they were closer to home. It’s difficult, even as a physician, to separate the mind from the heart in these moments. I could see his son’s love for his father mixed with an understanding that MND was not something he could fix.
Every decision was made with the realization that they wanted Mr. R’s life to have quality and meaning, however much time he had left.
Facing the Challenges of Continued Care
Four days later, Mr. R had improved, managing to breathe with just bi-level pressure support. We could see relief and resilience in his family’s eyes. I’ll never forget the way he waved to us as he was discharged, a subtle but deeply felt goodbye. We wished him well, knowing he was going home, back to the familiarity and comfort of his hometown, to his family, his life.
We stayed in touch after he left, making sure he had the support he needed as he transitioned home. Yet, over time, it became clear that the challenges were only beginning.
When we spoke with his son a few days later, he mentioned that a local doctor had advised against the PEG tube, suggesting it wouldn’t change the outcome. Mr. R’s son seemed uncertain, and each phone call felt like he was growing more distant from the decisions that could help his father live with dignity.
Then, on World Palliative Care Day, Mr. R’s friend—the one who had initially brought him in—arrived at the hospital, visibly distressed. Mr. R had taken a turn for the worse; he was bed-bound, often in pain, barely receiving tracheal suctioning, with minimal nutrition.
Listening to this young man speak, I could hear the urgency, the love, and the frustration. He was deeply concerned, and so were we.
We continued reaching out, hoping to discuss Mr. R’s deteriorating condition, to find ways his family could support him. But the responses became increasingly elusive. “I’m busy right now; I’ll call back later,” his son would say, an answer that repeated itself over days. As a doctor, I understood the toll, the exhaustion his family must be feeling, but it still stung to see the potential for Mr. R’s care slip away.
Reflections on Compassionate Care
Reflecting on Mr. R’s journey, I am reminded that the role of a palliative care doctor extends beyond medicine. We’re here to guide families, to bear witness, to help them find clarity amidst the fog of terminal illness.
For families facing the harsh reality of MND, each decision becomes a reflection of love and commitment. But even the most devoted families can struggle to accept, to process, to hold the weight of what’s happening.
Mr. R’s case speaks to the need for continuity of care—a bridge that keeps families close to the support they need when they are overwhelmed.
Empathy is the foundation of this bridge.
As physicians, we are not only here to prolong life but to advocate for its dignity, for care that respects the wishes of the patient. And through stories like Mr. R’s, we are reminded of the true meaning of palliative care. It is about allowing those who are suffering to feel seen, to be heard, and to find peace, no matter where their journey takes them.
Mr. R’s journey leaves a lasting impact, a quiet but powerful call to all of us in medicine: our role is to walk alongside patients and their families, offering them compassion, clarity, and above all, the dignity they deserve.
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About the Authors
Dr Ramanan Rajagopal is a senior consultant and lead in the department of Neuroanaesthesia and Neurocritical care at Gleneagles Health City, Chennai.
Dr Mohamed Nidhal S is a senior resident in the department of Neuroanaesthesia and Neurocritical care at Gleneagles Health City, Chennai.
Continuity of care in terms of check up at the clinic really matters here.