The long days and fleeting friendships of a palliative care worker

At 10 am on the first day of August, Shashi Bhandari’s small office was filled with the sounds of her colleagues exchanging morning pleasantries. But Bhandari was quiet. Sitting on the edge of a couch, she kept dialing the number of Ajit Singh but her calls went unanswered. She tried calling Singh’s mother and sister. No response.

Forty-year-old Bhandari is a palliative care counselor. Her office is a modest two-room apartment rented out in Delhi’s Dwarka Mor neighbourhood by CanSupport, a non-profit that focuses on improving the quality of a terminally ill patient’s life for as long as possible by relieving her or him of disease symptoms like pain, and minismising their hospital trips for little things. A counselor also cares for a patient’s emotional and spiritual needs, and advises families about how to take best care of patients.

Research shows that cancer patients who receive palliative care live longer than those who are just treated medically.

CanSupport was founded in 1996 by cancer survivor Harmala Gupta and Ruth Wooldridge, a nurse from the United Kingdom, and now has 13 centers across Delhi. Each center has a team of seven – one doctor and two teams of a nurse, a counselor and a driver each. Almost all the nurses and counselors are women. CanSupport’s staff of about 100 people care for 1,800 patients across Delhi. Ninety five percent of those patients have cancer. The NGO provides medicines and care for free while running on corporate social responsibility contributions and philanthropic donations. Counselors like Bhandari are trained by the NGO before they are sent out to meet patients.

The routine

Every morning Bhandari and Karmali KC, the nurse on Bhandari’s team, call patients they plan to visit during the day. Some patients have been referred to them by hospitals and others have come through the NGO’s helpline. Bhandari’s team visits between five and seven patients every day and meets very ill patients at least once in a week.

That day, while Bhandari kept ringing for Singh, Karmali confirmed other appointments for the day. Karmali gathered the necessary patient files and called their driver who came armed with a blue bag of medicines.

Bhandari insisted that they visit Singh’s house first. She recalls her first meeting with Singh last November, when she explained the process of palliative care to his parents while the 19-year-old sat quiet in bed. He had sarcoma in his left ankle. When Bhandari approached him, he didn’t want to talk.

“Many times patients don’t trust you the first time. You are an outsider. You don’t even look like a doctor,” Bhandari said during the drive. “You have to earn their love and trust.”

The case of Ajit Singh

Singh was diagnosed with cancer three years ago. Singh’s family moved to Delhi about a year ago from Moradabad district in Uttar Pradesh because making multiple trips to the All India Institute for Medical Sciences in the capital for his treatment had become difficult. The doctors at AIIMS suggested that Singh undergo palliative care along with his chemotherapy when the cancer had started spreading in his body.

On her second visit when Bhandari asked him again how he was feeling and if he wanted to talk, Singh snapped. “There is nothing left to talk about,” he had said.

Singh felt lonely confined to a room in Delhi. He missed his friends in Moradabad. Bhandari talked to him about how his family was still with him, and how he could still enjoy his time. She suggested that he accept his illness and make new friends. On her advice, Singh started putting his chair in front of the house every evening facing the open area where neighbourhood boys played. He made a couple of new friends. He started to trust Bhandari. He told her of his aspirations, wishes, fears, and about a girl he liked.

Singh turned a corner in perceiving his illness, unlike Babita – another ward of Bhandari’s.

Babita’s story

Babita had been diagnosed with rectal cancer three years ago when she lived with her husband and a two-year-old son. When her condition worsened, her husband left her at her parent’s house, where she now spends her time lying on a mattress in one of its tiny rooms, watching cooking shows. Her father, who had sold many belongings to pay for Babita’s treatment, lost his job recently. Now, one of his three sons earns for the entire family.

On their visit to Babita that day, Bhandari spoke to her while Karmali changed Babita’s colostomy bag – a plastic pouch attached to her stomach that has replaced her dysfunctional rectal passage ­– and checked if she had enough morphine tablets.

Babita is one of Bhandari’s most challenging cases because she is in denial about her terminal illness. “I want to live,” she kept saying.

She enjoyed life before her illness and doesn’t want to give up plans for the future.

“You won’t believe but I was a very lively person,” she said. “I love to eat. I learnt cooking by watching cookery shows. I opened champagne at India Gate. I went clubbing. I wanted to learn horse riding and photography.”

Babita is angry at the gods and her father and brothers for “letting her die in this room.” Bhandari spoke to Babita’s father who feels helpless. If he had money, he would admit Babita in a hospital to make her happy even if her cancer cannot be treated, he said. Bhandari told him that he has done his best.

“The best we can do in cases like Babita’s is relieve them of pain, hear them and their families,” said Bhandari, on the way back from Babita’s house. “It is important to listen. They sometimes tell us things they haven’t told anyone. Maybe it is easier to share feelings with strangers because there is no fear of getting judged.”

Bhandari feels that her profession has helped her become patient and she has learnt to listen. But she prefers not to talk about her patients to her family, not wanting to upset them. “She rarely talks about her day but always asks us about our day,” said her daughter Muskaan.

And that morning had been particularly tough on Bhandari.

A counselor’s loss

Nineteen-year-old Singh’s health had been deteriorating. On the morning of August 1st, as the CanSupport team’s car navigated busy Dwarka roads, Bhandari recalled that Singh had celebrated his sister’s birthday just the previous week. He had been eagerly waiting for the occasion and had ordered a gift online. Bhandari and Karmali were at the party and the cake was cut only after they arrived. Bhandari felt more connected to Singh than any of her other patients. Singh and Bhandari had exchanged personal phone numbers. Bhandari has photographs with Singh and his family on her phone.

The driver stopped the car in front of a residential complex where Singh’s house was. Bhandari and Karmali walked between rows of pink and yellow houses to reach Singh’s home but it was locked.

“Are you here for Ajit?” asked a neighbour.

“Yes,” said Bhandari.

“He died the night of his sister’s birthday,” said the neighbor. “They took the body to Moradabad.”

Bhandari said nothing. Karmali put her hand on Bhandari’s shoulder. “He was waiting to celebrate his sister’s birthday,” said Karmali. Counselors observe that many terminally ill patients hold on until they fulfill their wishes – in Singh’s case, it might have been his sister’s birthday.

That evening Bhandari fleetingly mentioned to Muskaan that Singh had died. Later, while she was alone cooking dinner Bhandari broke down crying but quickly wiped off her tears before her children or husband could see.