What empathy really means

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It was a working day, and I hurried to the kitchen. It was 05.45 am and I saw Suresh walking towards front door. He went outside, opened the gate and came back to the dining room. 

“Raji, I am feeling something strange in my throat. I am not able to swallow. But there is no pain!” he said. 

I replied rather casually: “Could be due to sore throat”. (The previous two days had been hectic for us with travel up and down to Pune). “You will feel better after a cup of hot tea”, I added.

As I was making tea, I saw Suresh drinking water from the jug. The next moment made me benumbed. What ever he was taking was coming out through his mouth and nostrils. He was chocking and coughing. I rushed to him, made him sit and consoled him by saying that it could be because the uneasiness he was feeling in the throat. I gave him tea in a glass, then in a spoon, but he could not swallow even a drop!

Looking at me helplessly he asked: “Raji what happened to me?”

I noticed that his voice had changed. It had a nasal tone.

My brain stopped working. I could not understand what had been happening. With a cluttered mind, I rang up one of my friends, a physician, to seek an opinion. After listening, he opined to get a neurology consultation. 

I spoke to the Neurologist over the phone and he suggested to bring Suresh in to the casualty. In the casualty the doctor who examined Suresh showed the neurological deficits to me – his palate was not moving on one side and angle of mouth was pulled to the opposite side. 

I suspected what could have happened. But why suddenly?  There I forgot that these symptoms quite often occur suddenly without warning!!

Things moved fast. Suresh was shifted to the MRI room. I waited outside. Perhaps those were the toughest moments in the whole episode. The MRI was normal. Suresh was shifted to the ICU. The neurologist explained to me that Suresh probably had a small brainstem lesion, which the MRI could not pick up, and he had to be observed for another 24 hours. He also told me that Suresh needed either IV fluids or nasogastric tube feeding as he was not able to swallow. I suggested the latter would be a better one. At 09.00 am Suresh received his first nasogastric feed.

I waited outside the ICU. I spent time talking to other bystanders and slowly realized that I was not much different from them!! I received innumerable calls, all seeking Suresh’s condition. Like an audio taped announcement, I answered all calls.

On the second day evening Suresh was shifted to a room. He was stable without further neurological deficits. Staff nurses in the hospital were giving the nursing care. I used to observe them particularly while giving the nasogastric feed, an act which I had only ordered, but never carried out in my professional life.

The feed had to be given two hourly and it was really distressing for me to give him tube feeding, as he is a sort of person who enjoys food. When I gave him the first tube feed, my hands shook and I had to try hard to control my emotions. Suresh had other problems too. He could not swallow saliva and had to spit into a bowl frequently. I could see on his face the frustration and embarrassment to face the visitors. 

Two days after shifting to the room, second MRI was done which showed a small infarct in the medulla. This piece of information was definitely relieving for me and probably for the treating team as there was a diagnosis– postero lateral medullary infarct, a kind of stroke. But it was shocking to Suresh!!! He is a person with healthy life style, including ‘clean habits’ and regular exercise. He never had any co-morbid illnesses and had a belief that he would unlikely to have problems like stroke. I found it as a hard task to convince him how such things could happen even when your health indicators are perfect!! The psychological issues of a chronic patient were becoming clearer to me as I had to answer long questionnaires on the following days.

Suresh was discharged after ten days of hospital stay with clear instructions on medicines and tube feeding. I realized the hardships of a patient on nasogastric feed and regular medications. The theory lessons had transformed into practical cum demonstration sessions. Many times I found that I was not as skilled as I thought to be!

What amazed me more was the change I had noticed in Suresh. He was a very supportive and caring person and used to take care of the minute aspects of things which I considered silly. But after coming from hospital I had found him irritable, getting cocooned into himself and least bothered about others and what had been happening around him. I felt strained between the two hourly feeding schedule and many activities at home which Suresh had been doing silently before the illness. I got irritated with his non-caring attitude at the moment which pushed me to ask one day: “Why don’t you ask me how do I feel” (an open question as we describe it in communication skills training!)

He replied indifferently: “I understand that you have a tough time. Then why should I ask to reiterate the same?!”

We had lots of visitors and to each person I had to start the story from scratch. With feeding tube in place, I found him disturbed while facing others. His morale swung up and down each day, depending on the responses from the visitors. He never stepped outside and slept comfortably.

As days went by I noticed that his palatal movements had improved. I encouraged him to swallow liquids and then fluids with the feeding tube in place. This was not easy as I often thought. The feeding tube is always a barrier and in Suresh’s case, there was an ulcer in the throat which made swallowing difficult and painful. To ease the pain, I gave him local anaesthetic viscous (Lignocaine viscous). It made his throat anaesthetised (he described the feeling as numb and swollen) and he stopped using it after single application. 

Suresh improved steadily. On review, his neurological status was almost back to normal. The Nasogastric tube was removed on the 5th of April, and he had food normally after a gap of one month. Initially he was very much concerned about swallowing food, taking almost double the time than normal. He is fine and is on regular medicines now.

While looking back I learned the following (positive things which I had in my case):

  • Suresh had a minor stoke and his condition was never critical – a bliss which does not happen to many patients.
  • I am a doctor who is able to interpret the course and outcome of an illness and the treatment. I have an upper hand in accessing the medical facilities too. Most of the people around us are on the other side.
  • I had the whole-hearted support from my friends, colleagues and family members in crossing this hurdle. Words fall too inadequate to express the gratitude to my mother who stood with me through thick and thin. I was definitely in a better position when compared to a left-alone bystander whom we often find in the hospital corridors.
  • Suresh’s illness was brief (though it was long for him!) The equation does not work when he is placed against a person who has to remain bed-bound for the remainder of their lifetime.
  • Though I had been a given clear instructions and a feeding schedule, I learned many practical points from Ms. Rajammal, one of our senior volunteers, who has been caring for her son. Her son had sustained head injury from a road traffic accident in January 2011. Learning the patience, endurance and skills which she had shown during these months is more valuable than reading an international textbook on the same.

Last but not the least; I learned what empathy really means!!!

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