A Different Form of Artistry: Why a music director became a palliative care provider
Sequestered amidst a labyrinth of progressively narrowing alleyways in central Kolkata, India, Bablu Das sits on a bed that occupies half the space of the 10-by-six-foot room he shares with his wife and 16-year-old son. The other half of the tiny room serves as the kitchen. We are seated on various stools and chairs on the narrow sliver of floor that separates the two areas.
A Harbor of Comfort & Peace
Among those drawn to Ruma Abedona Hospice's mission was Meheli, an oncology nurse disillusioned by her time on hospital wards where incurable cancer patients were often abandoned by medical teams.
“I didn’t know much about palliative care, but I heard about Santanu’s work and saw that it filled a void,” she recalls. “Once I started, I was hooked.” Her passion extended beyond palliative care; she also fell in love with Santanu. They married in 2016, and now their 20-month-old son, Nissan (Hebrew for "month of miracles"), is a lively presence at the hospice, toddling amongst patients and staff with complete abandon during our visit.
We visited RAH’s 14-bed hospice in Chandannagar, about 50 kilometers (31 miles) from Kolkata.
There’s a pond with a stone landing and a bench, a tranquil spot for contemplation. As we stand by the water, watching insects dart across its surface, she tells us how people were initially reluctant to come to the hospice. “But once they’re here, we sometimes have trouble persuading them to leave!”
She tells us of one patient—a convicted murderer with head and neck cancer—sent by the prison because he had maggots crawling out of his neck wound. "Initially, when he came to the ward, he was escorted by so many policemen, I had to play 'spot the patient.'” His wound was tended and his appetite rebounded before he eventually died at the hospice.
“One of his last wishes was to reconcile with his family and have his conviction expunged so that his children wouldn’t have to live with the fact that their father was a murderer.” RAH advocated for both on his behalf. His family came to visit him, and he died three days after his conviction was erased from the records.
Bablu Das shows the RAH social worker how many days he has not has a bowel movement. Photo by Shampa Sinha used with permission.
Bablu, a 52-year-old former insurance salesman, has his head swathed in bandages. His mouth is stuffed with gauze to prevent him from drooling. Two years ago, he discovered a lump in his left jaw that turned out to be cancer. The tumour was inoperable, so he underwent radiotherapy and chemotherapy. Unfortunately, the radiotherapy left him with trismus, a condition that prevents him from fully opening his mouth. He communicates with gestures and grunts. As he can no longer work and his wife needs to provide round-the-clock care he requires, the family is entirely dependent on the kindness of relatives to make ends meet. Despite his own worries he makes a drinking motion with his hand and gestures to his wife to offer us tea.
Home care is 'detective work'
In India, less than 1% of people who require palliative care have access to it, and healthcare is unaffordable or unavailable for most. Bablu is one of the fortunate few: he is cared for at home by the Ruma Abedona Hospice (RAH) team.
Today Priyanka, an RAH nurse, troubleshoots creative ways of repurposing a standard chair to make it easier for Bablu to access the squat toilet in his home. He has been avoiding laxatives because he is reluctant to bother his wife to help him to the toilet. He holds up seven fingers to show us how many days it’s been since his last bowel movement. Constipation, in turn, affects the absorption of his oral morphine. His pain and discomfort are contributing to insomnia. Priyanka describes her home visits as detective work. “You can’t assume anything,” she explains, especially when working with people who have low health literacy. She tells me that she has discovered patients using pestles coated in chili residue to crush their medications. Occasionally, people will report in a phone call that they are using the medications prescribed by RAH doctors, only for her to find unopened boxes during her visits.
A sense of purpose born from tragedy
A portrait of Santanu's wife, Ruma, after whom the hospice is named. Photo by Shampa Sinha used with permission.
RAH is the brainchild of Santanu Chakraborty, a former music director turned palliative care practitioner. Santanu’s journey to palliative care was born of personal tragedy. His wife, Ruma, died from non-Hodgkin lymphoma when she was just 29. During her final days, he was unable to find a single doctor or nurse in his hometown of Rishra to provide the care she needed. At the time, his career as a music director for one of India’s leading television networks was just beginning to gather momentum, but having experienced the gaping void in India’s medical care for those with life-limiting illnesses changed his path. Determined to ensure others would not have to suffer the way Ruma had, he resolved to create a palliative care service. “Everyone told me to move on,” he recalls, “but I didn’t want to. I wanted to improve things.”
With support from Joan and Bill Grosser, a missionary couple from Western Australia, Santanu completed a diploma at the McAuley Centre for Palliative Care, then a postgraduate degree in palliative care at Flinders University in South Australia. In 2002, he returned to West Bengal and founded RAH with just two staff members.
From 2 to 40 staff members, & beyond
Back then, he cycled to patients’ homes to provide care. Today, the organization has more than 40 staff members, operates five outpatient clinics in three districts in and around Kolkata, and is affiliated with the Chittaranjan National Cancer Institute, one of the city’s leading cancer hospitals. Private donations, including contributions from the Rotary Foundation, have allowed Santanu’s bicycle to be replaced by cars for home visits. The organization now serves more than 400 patients a month. During the COVID-19 pandemic, it expanded its role to supply oxygen canisters to patients who couldn’t afford them.
RAH founder and director Santanu Chakraborty at his office in West Bengal. Photo by Shampa Sinha used with permission.
All treatment is provided free of charge. For the patients who want to pay and can afford to do so, Santanu allows family or other caregivers to donate what they feel like to RAH only after the death of the patient. “I don’t want people to make a payment while we are providing care," he says, "because I don’t want them thinking the care provided is conditional on what they are willing and able to pay.”
Santanu shows us blueprints for his dream project, a proposed 100-bed hospice in Kanaipur for the terminally ill, with individual rooms with balconies. The plan includes grounds with a garden and a small water feature to offer an oasis from suffering. He already has the land and has estimated he will need about AUD 2.5 million to complete construction.
“You know, I never had a long-term plan when I decided to start this organization,” says Santanu. “I just knew I wanted to change things. Yet somehow, bit by bit, everything fell into place.” His idealism is contagious, and I leave feeling hopeful that someday all the Bablu Dases of India will have access to the care they desperately deserve and need.
Editor's note: Tax-deductible donations to Ruma Abedona ["without pain"] Hospice can be made through its Australian website.