“Even those who are lucky enough to get attention from their close ones realise at one point that the distance between them is growing,”  says Kumaran, 55, who became physically handicapped 35 years ago when he fell from a coconut palm and injured his spine.

Kumaran’s life reached a dead end after the accident, yet he plods on. However, the Institute of Palliative Medicine attached to Government Medical College in Kozhikode has brought the smile back to his face. Its volunteers attended to his emotional and psycho-social needs, enrolled him in their rehabilitation camps and made him at home at the institute. Today, he takes great pride in making paper bags, one of the various rehabilitation programmes the palliative movement in Kerala offers to such patients. 

Niranjana (name changed) lost her mental equilibrium many years ago. However, the ghazals she avidly listened to at a workshop on palliative care brought back faint memories of her childhood days. Both these instances stand testimony to Kerala’s fast spreading palliative care movement, which has shed hope on the lives of thousands of people with incurable diseases.

“Palliative care covers a broad area of incurable diseases including advanced cancers, incurable neurological disorders, extreme cardiac or respiratory ailments, AIDS and even dementia. We look at ways to make a qualitative difference to the lives of the patients and make life enjoyable for them,”  Dr Sureshkumar who heads the IPM  told Deccan Herald at the institute.  In fact, Dr Sureshkumar is a known pioneer in the field of palliative medicine often jet setting between countries to present papers and share his experiences. He has been a member of WHO committees on palliative medicine and the IPM itself has been made a collaborative centre of the organisation. Dr Suresh Kumar has also associated with the palliative care development programmes in countries like Bangladesh and Thailand.

However, Dr Kumar’s main contribution lay in the expansion of the programme he and his friends began way back in 1993 into a community movement called the Neighbourhood Network in Palliative Care (NNPC). The programme involves the local community – including autorickshaw drivers and headload workers – who have a couple of hours to spare as volunteers everyday. They are specially trained to communicate with such patients and relieve their physical and mental agony. The patients are given temporary treatment wherever possible or taken to the doctor.

“Palliative care should have ideally come from the doctor and nurse who originally treated a patient. There shouldn’t be a situation where a patient is asked to get expert treatment elsewhere.  However, since that is not practically possible here, the alternative is to involve the local community which knows the immediate needs of a terminally ill person in a particular area and counsel him or her,” says Dr  Sureshkumar. The NNPC also runs mobile clinics with a skilled nurse, a volunteer and a doctor. It visits the registered patients routinely and attends to their myriad troubles which include fear of death, emotional, psychological and even spiritual issues. Simultaneously, medical attention also has to be sought in cases of worsening pain or deteriorating health condition. 

Today, there are 310 palliative care clinics in the country out of which 250 are in Kerala, all registered as separate societies. “Out of these 250 units, 100 are run by NGOs while the remaining 150 have been established at the panchayat level,” says Dr Sureshkumar. This proliferation of palliative care units in the state would not have been possible without the active participation of NGOs, local self-government institutions, the state health department’s initiatives and above all the media attention that the subject received.

 Jose, coordinator at IPM, points out that the NNPCs became a success story because the local community took it upon itself the ownership of the initiative. Secondly, the methodology of managing patients with incurable diseases was also demonstrated to the community. The funds came mainly by way of local donations and state support. The National Rural Health Mission has also supported the palliative care project and set up its only nodal  centre in the country in Kozhikode. 

Indeed, non-availability of doctors has been a disadvantage of the programme as there may not be many doctors who prefer to take home hardly half the salary that even a government doctor earns. However, one doctor pointed out the flip side -- the immense emotional satisfaction and academic interest that their work evoked. Dr Sureshkumar points out that palliative care has been one area where the Indian experience is very much in demand. “Be it in publishing research or knowledge level, the west seem to have much to learn from us. Of course, the advantage for us is that it is one area where technology is least involved,”he said. 

All said, the proliferation of palliative care units in a small state like Kerala points to the importance of replicating them all over the country. Statistics show that at any given point of time, there are 1.25 lakh patients in need of palliative care in Kerala half of whom are already covered by the clinics in the state. Nationally, this figure works out to 50 lakh out of which only two per cent get palliative care. Dr Sureshkumar points out that outside Kerala, the palliative clinics are located mainly in the urban centres. The rest simply endure the pain and sufferings and wait for their end to come. Surely, the nation deserves a better deal to die honourably and less painfully.