Sitting in a bare room on the first floor, Dr. K. Suresh Kumar, director of the institute, recounts an experiment that has translated into a movement, bursting out of hospital walls and seeping into the soul of the community. He is wary of individual attention and gently says he is merely part of the core team that began the Pain and Palliative Care Society at Calicut Medical College in 1993. “It is about community ownership,” he says. But as the director of the first World Health Organisation Collaborating Centre for Palliative Care in the developing world, and a pioneer in the field who watched over the unprecedented growth of palliative care, he has become the face of the initiative in the Malabar.
The Kerala model
Suresh Kumar now tours the world giving lessons in the Kerala model of palliative care, replicating and remodeling it for other regions. “We are now disseminating our experiences in Bangladesh, Thailand, Sri Lanka, Jordan, Ethiopia and Seychelles. In India we are taking it beyond Kerala — to Tamil Nadu and are working with a group in Karnataka,” he says. The hallmark of palliative care here is the community involvement, says Suresh Kumar, who was an anaesthetist before turning full-time to palliative care.
“All of us have to die,” he says. “Only 15 per cent die suddenly. The rest 85 per cent have to tackle pain, debility or chronic illness. The medical establishment is not equipped to address the issues which are not merely physical. After the age of 65, most live with illness or dementia. It is important to build a system to look after these people for our own sake, for we are candidates for this situation down the line.” Suresh Kumar, an Ashoka Fellow, believes making palliative care a universal issue has touched a chord with people. “What a doctor or a nurse can do is limited. It is everybody’s business. Terminal illnesses can strike the very old and the young. One can make a difference by simply sitting and talking to the patient.”
The wind beneath the wings of palliative care in Kerala is the numerous volunteers. Those like Suresh Kumar know people come to the initiative with different motives — political, religious or social. The motivation can be anything, he says, as long as “they can make a difference to the way people die.” He adds, “Out of the 925 palliative centres in India, 850 are in Kerala.” Vibrant panchayats and local self-government have all given palliative care a boost, he says.
With 20 years’ engagement in the field, he says, there are many lessons learnt on the way. When they began, palliative care hardly had a blueprint in the developing world. “As doctors we address the pain of a patient with the needle. But when you start talking you realise there are lot of other issues to be addressed, many of which are not medical.” So what began as an institution-based approach soon expanded to the community. The first two volunteers of the Society were homemakers. The volunteers take on a two-pronged approach, first handling physical problems like bed sores and second talking to the patient.
An important task is to improve the quality of life of the patient, he says. “The task is to reduce the gap between a patient’s expectation and his reality. There can be a 40-year-old terminally ill patient who wants to see the wedding of her 12-year-old daughter, which is unlikely. Little by little we get them to accept reality. Some accept, while some keep looking for cure.” Along the way, the need to rehabilitate terminally ill patients was felt and Footprints was born. “There are bedridden patients who tend to live long. If they can earn something, it gives them self-respect. As part of Footprints, we train them, provide raw material and then buy the products. For many this is the first Rs 100 they have earned in a long time,” says Suresh Kumar.
The journey from a novice to an expert has also brought change in his work. “From 75 per cent clinical and 25 per cent administrative and fund-raising work, now it is 20 per cent clinical, 10 per cent teaching and the rest devoted to disseminating our knowledge.” Being in a profession where he has to see almost all his patients die takes its toll. Dealing with terminally ill children is the toughest part, he says. “Because the moment a symptom is relieved they behave normally. But you know it will come back.”
The past two decades have been a transforming experience for him. “First it teaches you to value your time, secondly you accept the fragility of things. Moments of realisation happen more often and you know even the little things you are stubborn about don’t matter. Though you still talk about death as something that happens to another.”
The Pain and Palliative Care Society was registered in September 1993 with seven members — Dr. M.R. Rajagopal (then the Head of Department of Anaesthesiology, Calicut Medical College), Dr. K. Suresh Kumar, Dr. E.K. Ramadas, Dr. Molly Joseph, Dr. Ganapathi Rao, Thikodiyan and P.K. Ashok Kumar. Four of them were anaesthetists. The society was formed after a series of meetings and different experiences each member had with terminally ill patients. Supported by two volunteers, they started in a small room of the college previously used as a store for nurses’ gloves.