The palliative care movement is a silent social revolution that is sweeping across the villages of Kerala.
The rain, like a battered street dog, whined all night. Listening to the patter of raindrops on the banana leaves outside the window, Sameer wondered if the rain’s whine rhymed with the ups and downs of his pain. As the rain tapered off and the first rays of dawn filtered in through the broken window, Sameer’s face paled into a soft smile. “I’m alive to see one more dawn,” he sighed. After a huge effort, he managed to turn his fragile, cancer-eaten body to face the window. Then the pain erupted again. It pierced through every nerve and cell of his body, every finger and toe. The beast mauled him with a thousand claws. Sameer cursed God for the millionth time; and, then prayed to Him to take his life.
Sameer’s wife rushed out to ask the neighbour to call Haseena. Within an hour, Haseena arrived with her two colleagues from the Palliative Care Society. She put the doctor-prescribed morphine tablets in Sameer’s mouth. “The pain will go soon,” she assured him. The team turned Sameer to face the window and started attending to his bedsore. They kept on chatting with him even as they dressed his wounds, changed the “condom catheter” to help him pass urine, and told his wife to give the morphine tablets to him every four hours without fail. They handed the next week’s supply of medicines to the wife along with five kg of rice they had brought with them. “We’ll be back next week,” Haseena told Sameer as the team prepared to leave. “We will find someone to sponsor a water bed for you so that there will be no more bedsores.”
As he watched the three trek back the hillside and disappear, Sameer wondered how his poor family would have coped without the support of the Palliative Care Society. After three years of fight with cancer — several rounds of radiation and chemotherapy and months of hospital stay — his family was broke.
Haseena and her friends are part of a silent social revolution taking place in Kerala’s villages, mainly in the northern districts of Malappuram, Kozhikode and Wayanad. The palliative care movement, born in the late1990s, has attracted thousands of ordinary people to the care of the terminally ill and bedridden people. And, tens of thousands of other common people make small donations to help the movement going. Trained volunteers like Haseena go to the homes of end-of-life patients and attend to their medical and psychological needs. “Since most of our patients are very poor, we have to provide not just drugs, wheelchairs and commodes for them, but often rice for the family, books and school fees for the kids and sometimes even clothes too,” says Haseena.
Sharafudheen Padath, a videographer who volunteers for a day every week for the Valanchery Pain and Palliative Care Society in Malappuram district, recalls how his unit once bought a pair of silver anklets for a five-year-old leukemia patient. A few days after she got her wish fulfilled, the girl died. The volunteers sit with the patients listening to their sorrows and fears. They also listen to the concerns of the family members and train them in simple nursing tasks. “Sharing of problems with the patient and the family is very important in palliative care,” points out Mohammed Saif, a pharmacist-turned-palliative care volunteer, who is now the State manager of the palliative care component of the National Rural Health Mission (NRHM).
The volunteers, coming from different backgrounds, serve at least two hours a week going on homecare visits, helping at the outpatient clinics and organising family help and raising funds. Most of the funding comes from the local people. For instance, in Nilambur, the crews of all the buses entering the local bus stand donate Rs. 2 a day, at the rate of 50 paise by each of the four crew members, to the Nilambur Pain and Palliative Care Society. Shopkeepers, autorickshaw drivers and schoolchildren all chip in.
Community participation in the management of pain and suffering of the chronically ill, called Neighbourhood Network in Palliative Care since 2001, is often referred to as the “Kerala model” (also, “Malappuram model”) internationally. “NNPC is a volunteer-driven people’s movement in which doctors and other healthcare professionals have only a secondary role,” says Dr. E. Diwakaran, director of the Institute of Palliative Care, Thrissur.
The movement has won global recognition and the WHO is now promoting it as a model for developing countries. “NNPC, with its focus on homecare, involvement of the community and the extension of coverage to many chronic diseases besides cancer, evolved in response to patients’ needs,” Dr. K. Sureshkumar, who heads the Kozhikode-based Institute of Palliative Medicine, recognised as a centre of excellence by the WHO, says. “It was a spontaneous evolution and was not planned by any single individual.” Volunteers, whom he calls the soul of the movement, had a big role in developing the concept, Dr. Surehskumar, who is one of the pioneers of the movement, adds.
Thanks to NNPC, about 70 per cent of patients needing palliative care in the three districts are covered. Palliative care coverage in Kerala as a whole is 20 per cent and in the rest of the country it is just two per cent, notes Dr. Anil Kumar Paleri, honorary secretary of the Indian Association of Palliative Care. In Malappuram district alone, there are 29 palliative care units, and 25 of them have their own clinics with paid part-time doctors and auxiliary nurses and own homecare vehicles. Each unit serves several Panchayats.
It was the astounding success of the Nilambur Pain and Palliative Care Society, set up in 1998, that became a turning point in the NNPC experiment, says Dr. Mathews Numpeli, the programme executive of NNPC. K.M. Basheer, a farmer who has only studied till Class X, who had worked with the homecare unit at Manjeri, founded the Nilambur unit. Basheer was perhaps the first non-medical person to have headed a pain and palliative care unit in the world. In just one year, he had 60 trained volunteers and the ranks swelled in the following years. “A kind and caring heart and willingness to serve without any financial return were the only qualifications required,” Basheer says.
Following the Nilambur success, many such units opened in Malappuram, Kozhikode and Wayanad and, later on, in many other districts too. Panchayats and municipalities support the movement with money and buildings to locate palliative care clinics. Lately, the police also have joined in the movement and there is an ongoing project to train at least two policemen in each station as palliative care volunteers.
Recognising the importance of palliative care, the Kerala government has, for the first time by a government in Asia, come out with a palliative care policy. The policy emphasises the community-based approach to palliative care and considers home-based care as the corner-stone of the palliative care services. It also highlights the need for integrating palliative care with primary health care.
The challenge now for NNPC is to carry it forward to a people’s “total health care” movement.
6 months ago