When holding on to treatment becomes a way of holding back grief. A few days after a clinic appointment, a young man appeared at the palliative
care clinic and asked if he could speak to me. I recognised him immediately.
Daniel rarely drew attention to himself. During consultations, he sat quietly beside his mother, Siew Lan, listening carefully and stepping in whenever she needed help. He was the kind of caregiver every healthcare professional hopes for: reliable, attentive, and always composed.
Looking back, I wonder if that was part of the problem. Because he appeared to be coping, I rarely, if ever, asked whether he actually was.
That morning, he had come alone.
“It’s the morphine,” he said, as soon as I closed the door, shutting out the chatter of the half-full waiting area. “Since the dose was increased, she’s been sleeping most of the time.”
His concern was understandable. At her previous visit, Siew Lan’s breathlessness had worsened and I had increased her morphine. The medication had eased her symptoms, but her illness continued to advance.
“I think the dose is too high,” he said. “Can you reduce it?”
As he spoke, I found myself wondering if this conversation was really about morphine at all. We could talk about doses and side effects. That was familiar ground. Yet something in the way he spoke made me hesitate. The urgency in his voice seemed bigger than the problem he was describing.
I had first met Siew Lan several weeks earlier. She was in her late sixties and had stage four lung adenocarcinoma. Chemotherapy had been stopped after complications developed, and the focus had shifted towards comfort and quality of life.
Breathlessness had become her greatest challenge. Morphine helped. It allowed her to move around with less distress.
Over the following weeks, Siew Lan’s illness continued to progress. She grew weaker. She spent more time resting. Gradually, she needed help with things she had once managed herself.
Daniel was her primary caregiver. In his twenties, he had left his job to look after his mother full-time. He managed her medications, accompanied her to every appointment, and spent most of his days responding to her needs at home.
As her illness advanced, much of his life came to revolve around his mother’s needs. He responded with action whenever a new challenge appeared. His attention was almost always fixed on the next task. The next responsibility. The next problem to solve. He rarely spoke about what was happening to him.
I understood that instinct. Medicine teaches us to respond to suffering by doing something. We order tests, adjust medications, make plans. Action feels productive. It also feels safer. Often, it is easier to do something than to sit with what cannot be fixed.
Now, sitting across from me in clinic, a clearer pattern emerged from his answers. Siew Lan was not merely sleeping more after the morphine increase. She was spending more time in bed, moving less, and needing increasing help with everyday tasks. Taken together, those changes sounded less like a medication side effect and more like the gradual loss of function that often accompanies advanced illness.
Gently, I tried to explain what I was hearing.
Before I could finish, he interrupted.
“No,” he said firmly. “I think it’s the morphine.”
Until then, he had always been calm and accommodating.
I paused.
Part of me wanted to persuade him. The medical explanation was straightforward enough. But something did not fit. Families who worry about morphine often reduce the dose themselves before coming to see us. Daniel had not done that. Instead, he had come to the clinic looking for a conversation.
In all those months, Daniel never stood still in the face of difficulty. Now, perhaps for the first time, he was confronting something that could not be solved by trying harder.
I told him I would arrange for the community palliative care team to review his mother urgently. Then I asked a different question.
“How are you coping with all this?”
The change was immediate. He lowered his head and covered his face with his hands. Then he cried. Shoulders heaving, breath broken, unable to stop. Months and months of grief finding its way out. I had not seen a man cry like that before.
For several minutes, neither of us spoke.
As I sat beside him, I wondered how long he had been carrying this alone. I thought back to our previous consultations. Had there been moments when he wanted to say something but never found the opportunity? Had I mistakencomposure for coping? Or had I been paying so much attention to the patient that I never really saw the caregiver sitting beside her?
When he finally began to talk, the story that emerged had little to do with morphine. He spoke about exhaustion, loneliness and the weight of responsibility that seemed to rest entirely on his shoulders.
Then came the guilt. The guilt that he was not doing enough. The guilt of feeling frustrated at times. The guilt of being unable to stop the illness from progressing despite everything he had sacrificed.
Beneath all of it was a grief he had not allowed himself to feel. He was beginning to realise that he was losing his mother.
For months, he had kept those feelings at a distance by focusing on what needed to be done. Every task gave him a way to help her. Perhaps those tasks offered something else as well.
Protection.
As long as there was something to fix, there was less room to think about what he was losing. But illness eventually reaches a point where there are fewer things left to fix. When that happens, grief fills the space that action once occupied.
After he had gathered himself, we returned to the practical matters that had brought him to the clinic. The conversation felt different. I do not think Daniel came because he truly believed the morphine was harming his mother. I think he came because he was watching her slip away and did not know where to place the fear, sadness, and helplessness that came with that experience.
That day reminded me how easily caregivers can disappear into the background of our consultations. We ask about symptoms, about medications, about care plans. Meanwhile, the person sitting quietly beside the patient may be carrying exhaustion, loneliness, guilt, and grief long before any loss has occurred.
Sometimes they carry it so well that nobody notices.
As Daniel left the clinic that morning, the question of morphine no longer seemed important. What mattered was that, for a few moments, there was no problem to solve. There was only a son facing the possibility of losing his mother.
That was the conversation he had come for all along.
I had not yet fully appreciated how much suffering could remain hidden behind a caregiver’s competence. I left that encounter wondering how many other caregivers I had overlooked. Not because I did not care. But because they appeared to be coping.
Since then, I have found myself asking a simple question more often: “How are you managing?” Sometimes, the answer changes the consultation entirely.
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Dr Ruben Vighnesvaran is based at the Palliative Care Unit, Raja Permaisuri Bainun Hospital in Ipoh, Malaysia. He cares for patients with advanced illness and supports families through difficult decisions at the end of life. He writes reflectively about these encounters, sharing his work in his Facebook page, Always Something More-Reflections in Palliative Care. https://www.facebook.com/alwaysomethingmore
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