Rana Dasgupta - Capital - The Eruption of Delhi

She recounts the details. A couple of years ago, Amit’s forty-four-year-old mother began to have difficulty swallowing, and he took her to one of Delhi’s big corporate hospitals. When, after two months of tests, the doctors could not work out what was wrong, they advised him to take her to see the experts at the All-India Institute of Medical Sciences. But there was no room there and the specialists had no time. Half of them were quitting to work for the corporate hospital in which we are now sitting. One of them told Amit to consult him here, which he did. The specialist conducted three days of tests and presented a diagnosis: Amit’s mother was suffering from polymyositis, an inflammatory muscle disease.

Shibani and Amit are in their mid-twenties. Shibani is quiet and serious; she wears a slim-cut salwar kameez. Amit wears a shirt and jeans. While Shibani is talking, he wordlessly shows me a photograph of his mother on his mobile phone. A rotund, smiling woman in a sari.

“That was before all this began,” says Shibani.

She continues her narrative.

“The doctor immediately told us he wanted to give her an injection that would cost 4 lakhs [$8,000]. Amit did not have that money, so he called his uncle to ask if he could borrow it. The doctor told us this would restore his mother’s muscles and there was no alternative, so we had to do it.”

The injection he was proposing was intravenous immunoglobulin, which has been shown to assist recovery from polymyositis. This therapy is still poorly understood, however, and it is unusual to offer it before administering corticosteroids. After administering the injection, the doctor sent Amit’s mother home, giving Amit and Shibani instructions for feeding her with protein powders through a tube in her nose. At home, however, her lungs were filling up with the constant flow of saliva which she could neither swallow nor spit out. Afraid that she might drown, they rushed her back to the same hospital in the middle of the night. There she was given an oxygen mask and diagnosed with pneumonia. The next day, more tests revealed that she also had a kidney infection. She was immediately transferred to the intensive care unit.

The doctor remained calm about all of this. He said,

“I knew this would happen. But if I had told you all the side effects of the immunoglobulin, you wouldn’t have gone ahead with it.”

He put Amit’s mother on renal dialysis. A temporary tube in her arm was replaced by a permanent one in her chest. Then the doctor set about trying to rescue her respiratory system from the saliva flow. He administered another dose of immunoglobulin to strengthen her lungs. Then he performed a tracheostomy and inserted a tube to divert saliva away from the windpipe.

“They said it would only be needed for fifteen days,” says Shibani. “But after fifteen days they said she needed a permanent tube and the one they had put in was only a temporary tube. The permanent tube cost another 75,000 rupees [$1,500].

“We were spending so much money. The day rate for staying in the intensive care unit was 16,000 rupees [$320]. Oxygen and dialysis came to as much as 45,000 rupees per day [$900]. Every night, Amit had to visit relatives all over the city to borrow money. People were giving us cash from their wedding funds.

“You don’t know what to do. When you have the patient lying on the bed, the person who has brought you up, you are so emotional you cannot think. And this is how they get you.

“It was going on for weeks. Every day they would say, ‘Your mother is recovering.’ Our hopes would rise. Then they would say, ‘She is not recovering.’”

We are a quiet group. Shibani’s voice is soft, and we are all gathered around it. Amit looks into his half-drunk coffee as he listens; Aarti’s gaze takes in the hot morning outside, and the manicured garden.

“Meanwhile her blood platelet levels had sunk to critical levels. And her saliva was still not controlled, so that she could no longer even talk, let alone eat. The doctor proposed another drug which would cost 1.7 lakhs [$3,400]. They administered this drug, which was supposed to restore her system and control her saliva flow. It had no effect. The doctors said to us, ‘Of course it is not working. All the medicine is being flushed out of her body by the dialysis.’

“It was hell in there. People were dying at such a rate in the intensive care unit that there was panic all the time, and no one to take care of Amit’s mother. The doctors never came to see her. They had no link at all to their patients. We were not allowed to go into the ward to see her. They never told us anything except, ‘She needs more medicine.’ There was nothing we could do except pay the bills. Every evening we received the bill for the day and we handed over the cash we had borrowed from our family. When you went to the accounts department, you saw massive trunks of 1,000 and 500 rupee notes being carried out to the bank.”

Aarti laughs wryly. Shibani continues,

“We asked to take her out of intensive care, which was so expensive, so they put her in a normal ward where we could spend time with her. But she had reached a terrible state. She had bedsores and she was continually crying. All she would say was, ‘Take me out of here!’

“We asked the doctors what we should do. They said, ‘She is not eating. We need to put a hole in her stomach so we can feed her through it.’ While we were discussing this with them, a nurse came in to tell us that Amit’s mother had passed away.”

Tears begin to pour down Amit’s face as Shibani recalls this moment.

She says, “And you know what the doctor said to us? He said, ‘Perhaps if we put her back into intensive care and put her on a ventilator, she’ll revive. We can try that.’ So I said, ‘On one condition. I want to stay with her the whole time and watch what you do.’ And the doctor said, ‘Families are not allowed into the intensive care unit.’ So we said, ‘Then we won’t do it.’ And he said, ‘Of course, if you don’t want your mother to live, then… I mean there is a 1 per cent chance that she will live — who are you to decide that she should not survive? But if you don’t have money… ’

“But we were done. It was over. We told the doctor, and he left us.

“We went in to see Amit’s mother. Immediately someone came to collect the outstanding money. They talked to us across her dead body. ‘You have 2 lakhs [$4,000] outstanding. Please pay.’ They had no respect. They talked over her body. In India we respect the dead, you know? They were so rude.”

Amit intervenes. “When we cremated my mother, the priest told me her bones had turned to powder.”

Shibani is fiery with the rage all these memories have aroused.

“People are dying for no reason,” she says. “At least we have a little money. We met people who were kicked out of the hospital when their insurance money was used up, and the doctors hardly bothered to sew them up. Of course, people who have no money at all don’t have a chance.”

“These hospitals are totally corrupt,” says Aarti. “Patients are only profit. Nothing else. Anything they can’t understand they call cancer because then they can pump you with the most expensive medicines. This religious, spiritual country — the humanity is going out of it. Very little good is being done but a lot of harm is being done.”

“What happened to your husband?” I ask her.

“He died here too. Just before Amit’s mother. He was a very good man. We had forty-three years of beautiful companionship. These days very few people can say that. I was married to a man who never stopped thinking about me and looking out for me.”

I realise Aarti must be older than she looks.

“He came from a well-known family. There were famous journalists and academics in the family, and film stars. He had a successful career and we moved in good circles. Anybody who’s anybody in Delhi, I know them.”