Dr. Raj, one of the drivers of the movement, disagrees. “Yes, of course the strength of the community is important. But is Kerala the only part of the world where there are compassionate people? Is Kerala the only place where people who may have gained material success then want to do something meaningful with their lives?”
Now a youthful 69, he recognized early on that tackling pain and supporting the dying could not be achieved by medical staff alone. The need was too great. It would depend on harnessing the commitment of volunteers.
In 1993, after he had attended a course run by an English nurse, Gilly Burn, he and his colleague Suresh Kumar established the Pain and Palliative Care Society in Calicut, a town in the north of Kerala, together with an activist friend, Ashok Kumar, who ran a printing business and provided a vital layman’s perspective.
“Six of us put in 250 rupees each, worth about £10 then,” says Dr. Raj. “We found two volunteers, young women with children at school, to register patients and sit and talk to them. Then I would come after work to see them.”
The project took off after Burn, who ran a trust, Cancer Relief India, donated 100,000 rupees (£4,000 in the mid-1990s), enabling them to appoint their first doctor. Calicut hospital provided two nurses.
“It very quickly got attention. In the hospital, we were working in a sea of suffering. But in the clinic, you could see people smiling, talking, finding comfort.”
Within a year, it was being copied—by a medic whom Dr. Raj met on a train and by a former student who wanted to open a clinic in his own town. The ball was rolling.
There was a limitation, however. It was exposed early on when a young man came begging for help for his mother, who was in severe pain. She lived in a remote spot where there was no road and could not be moved. When Kumar told the man that the doctors could not prescribe without seeing the patient, he broke down in tears. Kumar weakened and told the man someone would come. It was their first home visit. Gradually demand increased. Then someone donated a vehicle.
The doctors, working in their spare time, could not meet the demand alone. The organization of the clinics and the home visits depended on volunteers. But the volunteers also provided the link between their communities and the service—they knew who was sick and where to get help. Over time, they became more and more involved. Some assisted with nursing tasks, following brief training, but most provided social care—advice, support, a shoulder to cry on.
By 2000, there were 30 palliative care groups in northern Kerala, run by volunteers and supported by mobile medical teams. Today, though there are no official figures, Dr. Raj estimates there are 300 voluntary groups across the state, providing care to patients in their own homes, identifying those in need, and helping to direct limited medical resources to where they can do the most good. Kerala is now a World Health Organization demonstration site for palliative care and plays host to a stream of international visitors wishing to learn how it was done.