Book Extract: Pain, Grace and Resilience

'Walk with the Weary' presents lessons in caring for patients in pain from Dr M.R. Rajagopal of Palliam India

Child cancer patients play inside the paediatric oncology division of Tata Memorial Hospital in Mumbai
Child cancer patients play inside the paediatric oncology division of Tata Memorial Hospital in Mumbai

Dr M.R. Rajagopal

Children are amazingly resilient. In my experience, they can process bad news much more easily than adults. Of course, this is not true for all children, or for all adults for that matter; this is but a generalisation that applies to the majority. We completely fail to recognise children’s reasoning abilities. ‘After all,’ we say, ‘he is but a child. What can he understand?’

When we adults fail to give children vital information, they suffer. They suffer terribly. When we hide information, they sense it and immediately get the message that questions are pointless. And if they suspect we are covering something up, they can get extremely anxious.

In one of the hospitals I worked at, we tried to prevent ‘procedure-related pain’ in children suffering from cancer. Until we intervened, the situation had been pathetic. Doctors and nurses at varying levels of training and with varying expertise would perform venepuncture—the insertion of a cannula into a vein for intravenous administration of medicines. Often, the child would be held down by force.

Bone marrow puncture is a procedure where a thick, large needle goes directly into the bone to draw out blood cells from the centre of the bone. It is often done with no attempt at all to prevent or treat the ensuing pain. (The covering of the bone, periosteum, is one of the most sensitive parts of the body, and a needle going through it can cause terrible pain.) The same holds true for lumbar punctures where the heftiest hospital attendants would tear the child away from their mother’s arms and almost break the child in two to keep the back curved while a needle was inserted between the two vertebrae.

Such pain impacts much more than physical suffering. It can cause uncontrollable panic attacks or behavioural problems in the long term. The saddest part is that much of this suffering is unnecessary. Even with limited resources, pain can be prevented.

So, to begin with, we drew up concise guidelines to prevent procedure-related pain. It was not a success. Doctors were pressed for time; they did not even want to look at it.

Nurses were even busier. First attempt: failure.

We changed our strategy. Could the children be sent to our clinic prior to the procedure so that we could prepare them for a painful procedure? This worked. The little ones walked over to the clinic from the children’s hospital situated across the road. It became something like a get-together, almost like playtime.

We would apply EMLA cream on the skin and cover the area with a piece of sticking plaster. (EMLA is eutectic mixture of local anaesthetics, a name so long and unpronounceable that it might have been invented to bolster reverence for the medical profession.) After about forty-five minutes, these areas would become insensitive. The children would then stream back to their cancer ward for their injections.

The difference it made was phenomenal. Much of the agony was abated; but not all.

We tweaked our methods based on feedback from the children. We had applied the cream on one spot for Abdul’s lumbar puncture. Abdul was a talkative and forthright child. We asked him, ‘Was it any better this time?’

‘Oh, pinne!’ (A sarcastic ‘yes, indeed!’) ‘You put it in one place, but they poked elsewhere.’

So, we became more liberal with the cream.

This ritual actually brought the children and their mothers closer to us. At first, only a small number of children with pain or other serious symptoms would come to us. Soon, they would all troop into our clinic. Their problems became ours. Thankfully, many paediatricians were supportive.

That was how we came to know about Abdul’s fears. He had questions that nobody would answer. After our conversations with him, he understood that his cancer was curable. But he had other fears inside him.

‘Ok, my cancer may be cured,’ he said, ‘but if not?’ ‘If not…?’ I gently prodded and waited for him to continue.

‘If I die, won’t I get punished by God?’ the tentative question came out in a soft voice. ‘Why, Abdul?’ I asked.

‘Why would God punish you?’ ‘Because I have sinned,’ was his reply.

So here was Abdul, a sinner at the age of eight or nine. What was the sin? He had often pulled his sister’s hair when he was angry. He had gone once so far as to steal her pen and hide it.

Wouldn’t God punish him? We called his parents in and talked about the need for an open conversation, so that the child does not harbour such unrealistic fears. His father could easily solve the problem. He worked in a mosque.

He told us, ‘For wrongs committed by children below fourteen years,’ (or fifteen, I do not remember) ‘they are not punished.’

That reassured Abdul. If it came to the worst, he would die. He was ready to die so long as there was no punishment in store for him.

Time and again, we came across a lot of suffering stemming from religious beliefs. Children’s faith in God is often absolute. When they believe in God and in their religion, they do not doubt Him. They do not doubt their parents or other elders [either], when they give faith-based information. So, we tried our best to help children overcome some irrational fears.

Little Joseph was another child in misery because of fears associated with death.

One day, Joseph’s mother rushed into our clinic, and started sobbing uncontrollably. A few minutes later, having cried her heart out, she explained that she had come in just to cry.

‘Mom, will I die before you?’ her son had asked her that day.

The question was overwhelming. She asked the mother in the next bed to look after the boy for a while and rushed to us, where she felt safe to cry, and where she could be sure of a shoulder to cry on, or a hand to hold hers.

By this time, we were more or less familiar with the fears that children with terminal illness often lived with. They had their own social circle in the ward for discussions. The mothers would try to keep secrets from them; and so would the nurses and doctors. In their foolish faith in the assumed stupidity of children, adults think kids will never know. But the kids would talk to one another when their mothers were out of earshot.

‘Did you know Ram died last night? Was it C.M.L.?’

‘No, A.L.L.’

The children knew the diagnoses; they knew the names, chronic myeloid leukaemia, acute lymphocytic leukaemia, and so on. They would converse, in whispers, about death.

Joseph had obviously his own concerns about death. We gently persuaded his mother to bring him to us. He might have fears, and they could be worse than reality. We needed to find out what they were in order to ease them.

After some persuasion, Joseph’s mother brought him to us. I made him sit beside me and requested his mother to let me talk to him alone. She reluctantly went outside. There are some advantages to being bald, grey and old; young people find it difficult to refuse you when you ask for a favour. Joseph’s mother walked out of the room; but I could see her sari blowing in the wind against the door.

‘Hey, Joseph,’ I said, ‘I hear you have been asking questions about death. Ask me. I shall try to answer them.’ There was no reluctance, no hesitation.

‘When they bury me, won’t I suffocate?’ his voice turned shaky.

I could easily dispel this fear for him. No; I assured him that if he did die, there would be no suffocation because there was no discomfort at all once someone was dead. We also talked about the chances of cure for his cancer.

‘Any other questions?’ I asked.

‘Can I go and look at that computer?’ he asked.

He had moved on to the next thing

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