In a leafy Bandra lane, a bungalow converted into a 2-BHK palliative-care centre has light-coloured walls and bright furniture. In one room, on Thursday, with a bandaged arm, an old man discussed his problems with a counsellor. In another room, a doctor waited patiently to provide medical help. On the verandah, round tables and chairs were parked amidst greenery for patients to relax. It is a gift from a mother for her daughter.
In 2013, when Romila Fernandez succumbed to cancer in her early thirties, her mother Dr Armida Fernandez realised the lack of emotional support, pain management and counselling her daughter got during her final bed-ridden phase. She started brainstorming. This year in January, Fernandez opened a voluntary palliative care facility where people are encouraged to volunteer and doctors are invited to provide free services for those battling life-threatening ailments with no curative treatment.
“Although we have best of medical care, the comfort and quality support is missing from life-limiting diseases. There is a big gap in palliative care. I decided I did not want my daughter’s death to go in vain,” Fernandez, 74, said. She saw her daughter Romila, after whom she named the centre, live her final days in pain. “If we needed pain management services, it wasn’t easy. There is no counselling for a family on how to cope with end-of-life care or bed sores management,” Fernandez added.
The Bandra-based Romila Palliative Care provides free medical and psychological support to patients from slums and affluent society, who battle a range of health conditions — dementia, cancer, physical handicap and paralysis. With two full-time doctors and two nurses, 21 volunteers and four voluntary doctors, they have cared for 37 patients. Eight of them have passed away. According to Pouruchisti Wadia, assistant project director, a volunteer undergoes a six-day training by Tata Memorial Hospital before joining.
“They can visit the home of a patient at their convenience. The aim is to provide the patient someone they can talk to, someone who can provide emotional support.” Christine Saldanha (54), a marathon runner employed in an administrative job, is one such volunteer. She first realised the need for palliative support when her father passed away in 2006 following a stroke.
“I always wanted to help. But there was no facility I could support,” she says. She underwent training at the centre and has visited the home of one cancer patient in Bandra. “I sat and spoke to her. She is old and cannot cook, so we arranged for tiffin every day. It is a fulfilling feeling. I plan to do this full-time after retirement,” she adds. Like her, volunteers usually visit the homes of patients on Saturdays and Sundays only to lend an ear to their problems. Patients are referred from Holy Family Hospital, Bandra, or by doctors who volunteer with Romila Centre. In Mumbai, there are less than half-a-dozen palliative services, such as Dabur and Care24.
Tata Hospital, Bhakti Vedanta, Kokilaben Dhirubhai Ambani Hospital provide out-patient palliative facility. “But the demand is huge and supply is minimal,” Fernandez says. After battling advanced breast cancer for years, a 40-year-old Dharavi slum-dweller is finally receiving palliative care at this centre. Her husband is a cook with meagre earnings. She undergoes physiotherapy, counseling sessions and emotional support through volunteers. She has now referred her paralysed brother-in-law for palliative care. Through donations, the centre is able to provide free dabba service and financial aid for medicines.
Another Andheri-based dementia patient, aged 70, has a working daughter who looks after her. “The daughter feels lonely. The volunteers are trained to listen to their problems. Palliative is not only about handling a patient, but also involves counselling a family for the worst,” director Wadia said.
According to Fernandez, who is credited with starting the city’s first human milk bank, talks are underway with the Brihanmumbai Municipal Corporation to start out-patient services for palliative care in major hospitals. As Fernandez puts it, she wants other people to benefit from what she learned through her daughter’s death.