“Would You Understand?” — A Reflection on Total Pain, Presence, and the Duty to Care

Dedicated to the memory of Dame Cicely Saunders (1918–2005), on the 20th anniversary of her passing. – Dr Rubayat Rahman

I’ve spent years immersed in conversations around pain — in its physical forms, in its emotional shadows, in its quiet spiritual depth. But every so often, a patient enters your life not only to be cared for, but to reshape how you understand care itself. As a palliative care clinician and researcher, I have often asked myself: Do we truly understand our patients’ suffering — or do we only record it? The answer came to me not through textbooks or conferences, but through one patient — Mohiuddin — whose story continues to shape the core of who I am.

He Stood for Four Months and Fifteen Days

It was around mid-2017 when I first met Mohiuddin. A brilliant science student from Jahangirnagar University, young and full of promise, he had been diagnosed with anal cancer — a diagnosis cloaked in silence, discomfort, and unbearable pain.

By the time he was referred to our palliative care unit, the cancer had invaded every aspect of his being — not just his body, but his dreams, his dignity, and his hope. He had not lain down for four months and fifteen days. He simply couldn’t. The pain was too sharp, too cruel.

When he finally did lie down — just before dawn in our ward — he didn’t sleep. He simply closed his eyes. Not in pain , but in comfort. The pain reliefed.

That was the moment I saw total pain — the kind Cicely Saunders described. Not just physical agony, but suffering wrapped in emotional distress, spiritual isolation, and social disruption.

I remember standing at the edge of that bed, thinking, How did we, as a system, let it come to this?

Total Pain: The Kind That Doesn’t Fit Into Charts

Cicely Saunders introduced the world to the concept of total pain — a profound recognition that suffering is never just physical. It is emotional, spiritual, social — and deeply personal. As I watched Mohiuddin’s struggle unfold, I came to understand what she meant in its rawest form.

His pain was not only from the tumour pressing into nerves. It was from:

the loss of his academic dreams
the guilt of being a burden to his family
the fear of dying without saying goodbye
the quiet shame of being so young, and yet so near death

And as a clinician, I found myself constantly questioning: Do we truly listen? Do we really understand our patients’ pain — or only document their symptoms?

The Phone That Meant Everything

After weeks of care, we arranged for Mohiuddin to return to his ancestral village in Joypurhat. He longed to be with his family — to hear the birds in the morning, to sit under the mango tree in his yard. But he also asked, nervously:
“Sir, if I go, will you still be there for me?”

We gave him our 24/7 departmental mobile number — a lifeline we’ve provided since 2007 to all patients under our care. For him, that phone was not just a tool; it was a thread of continuity, of humanity.

He called once a day. Then twice. Then ten times. Sometimes fifteen. At midnight. At 3:00 a.m. Before Fajr. Not always for painkillers — often, just to talk.

“Doctor, I want to pray Tahajjud (a special prayer at mid night) tonight. Will you stay on the line with me?”

And I did. Because in that moment, presence was the only medicine I could offer.

Some colleagues grew weary. “Too much,” they whispered. Others quietly avoided night shifts. But our department head, Professor Dr. Nizamuddin, gently said:

“Let me take the calls for a few days. This kind of pain deserves to be heard.”

That was the moment I understood what palliative care truly was — not simply about pain control, but bearing witness to suffering, in all its forms.

“Do You Have Cancer?”

One night, my professor softly asked Mohiuddin,

“ Do you really need to call this often?”

There was a long pause on the other end. And then came a reply that has stayed with me since:

“Doctor… you won’t understand my pain — do you have cancer?”

There was nothing left to say.

That single sentence dissolved every irritation, every doubt. It became the compass guiding our work. As clinicians, we are trained to offer solutions. But what patients often need is not a solution, but a soul who sees them, who listens — who stays. That one question cut through everything. It reminded us what it means to be present — even when we cannot fix, cure, or promise. It taught me that presence is medicine.

Mangoes, Dreams, and the Last Phone Call

As time passed, Mohiuddin’s calls became softer, more spaced out. The disease had taken its toll. Toward the end, he whispered,

“Sir, do you think I’ll get to taste this summer’s mangoes?”

I had no answer.

Then, one evening, the phone fell silent.

Worried, I dialed back. His sister-in-law answered, her voice calm and steady:

“Bhaiya, he has gone to meet his Lord. When he passed, the phone was still clutched to his chest.”

I didn’t cry. I just sat — with silence that was fuller than any words.

Reflections on a 20-Year Legacy

Today, on the 20th anniversary of Dame Cicely Saunders’ death, we remember her not only as the founder of modern palliative care, but as someone who listened when no one else did. She gave us the lens of total pain and the courage to say, “You matter because you are you, and you matter until the last moment of your life.”

Mohiuddin mattered. His pain mattered. And what we learned through him continues to guide our care, our practice, our ethics. I think of what she taught us — that the care of the dying is not an act of defeat, but of sacred responsibility.

As a clinician, I know we cannot cure everyone.
As a researcher, I know systems are complex.
But as a human being, I know that no one should die feeling unheard, unseen, or alone.

Mohiuddin was one patient. But his story carries the weight of thousands.

In him, I learned that:

A phone can be a lifeline.
A 3 a.m. call can be more important than a protocol.
And if the patient cannot come to the health system, then it is the duty of the health system to go to the patient.

Moving Forward: A Pledge from Our Part of the World

Here in Bangladesh — far from the halls of St. Christopher’s Hospice — we may not have every resource. We may still struggle with access, stigma, and system gaps. But we carry Cicely’s legacy forward, with our own hands, in our own voice, in our own way.

We do not walk her path step by step — we make our own road, through riverside villages, crowded cities, and places where even a phone call becomes a form of care.

Because if a patient cannot come to the health system, then it is the duty of the health system to go to the patient.

We must build a health system that listens — not only to vitals, but to voices.

A system that values dignity as much as data. That trains not only in drugs, but in presence.

This is our commitment. This is our promise.

We need:

Palliative care embedded at all levels of health systems
Continuity beyond discharge, especially in rural contexts
Integration of social, emotional, and spiritual support
And above all, a culture of listening

Because, in the end, what most people want — what Mohiuddin wanted — was not just pain relief, but to be remembered as a person, not a case.

A Final Reflection

Palliative care is not an end-of-life service. It is a philosophy of compassion and relieving suffering. It does not belong to any one culture. It belongs to all who believe in dignity.
It does not begin with death. It begins with presence.

And in the silence of a phone clutched to a dying young man’s chest, I still hear the echo of a promise: Where illness ends, love must begin.