For the terminally ill, a volunteer group that offers social support
The idea to encourage common people to provide palliative care was the brainchild of Dr Armida Fernandes, who is credited with the country’s first milk bank at Sion hospital.
Volunteers meet on a monthly basis to discuss progress of patients
Every week, Mariola Pinto (58), takes a brisk 10-minute walk to a Bandra flat to find a 60-year-old man mostly asleep. He has been diagnosed with final stage, stomach cancer. On better days, he demands to eat a spicy sandwich and Pinto holds his hand to walk a short distance to his favourite street food hawker. “That is the only wish he urges me to oblige with. Nowadays, he has little strength to walk around but he loves spicy food,” Pinto says. When she finds him sleeping, Pinto chats with his elder sister to ensure she is coping well. Pinto sees three other patients routinely as part of a voluntary group that provides palliative care to the terminally ill and support to their families in Mumbai.
In a year, the group’s strength has become 20. Most volunteers have witnessed the death of a close family member and understand the need for palliative care and the widening gap in India. The idea to encourage common people to provide palliative care was the brainchild of Dr Armida Fernandes, who is credited with the country’s first milk bank at Sion hospital. “There is dearth of palliative care experts in India. I realised it when I saw my daughter die of cancer,” she says. She approached churches in Bandra to spread the word and soon, several people volunteered.
Those interested, participate in a workshop for 10 days followed by six weeks of training at Tata Memorial hospital. “When a person shows interest, we train them to learn to disconnect. Caring for those on deathbed can be overwhelming,” said Serena Das who coordinates with the volunteer group. Over weekends, the volunteers, mostly professionals, visit the houses of patients to help them out with chores, sometimes pray with them and on most occasions, just hear them talk. Most patients are old and lonely and need someone to talk to.
Taruna Fernandes, 52, also a volunteer with the group, lost her husband in 2012 due to renal failure. “When I first came to know about palliative care in 2017 during a retreat I realised it is a lovely way to help people who are facing the end of their lives,” she said. She visits three patients routinely and calls them up when free to let them vent. “I can identify with their pain. If we had this kind of support when my husband died, I would have been less hyper,” she says. Most patients who are referred by doctors to the group suffer from final stages of cancer. Some are old and bedridden.
“Financial aid was provided by the church to a patient belonging to a minority community. In another case, we took care of a patient’s child’s education,” Fernandes said.
The volunteers have helped many patients hope to live again. Fernandes claims a patient would refuse to take morphine to relieve pain. “Eventually, after our visits, he became chirpy. I once found him all powdered up and ready to meet us,” she smiles.
Currently, the group visits patients in Dadar, Mahim and Bandra. “We have a lot of patients and there are more people showing interest in volunteering. But we are taking it slow. Palliative care requires training,” said the founder, Dr Fernandes.
According to Dr Mary Muckaden, a professor of palliative care at the Tata hospital, while the government has a palliative care programme, it has been slow in implementation. “With mortality rates high in cancer, we need more such support groups,” she says.
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