It is a movement that is steadily growing. Auto-rickshaw drivers pitch in for a morning each week. Hard-working farmers still manage to contribute their time. Retired bankers bring their own dedication. Even the police, like those of Kannur district, have become major partners. Thousands of these volunteers are working to provide care and help to terminally ill or bedridden people. Kerala's community-led initiative aiming to provide home-based palliative care has grown into a genuine peopleâs movement and is hailed as a model that can be replicated in other states.
Currently there are some 50 lakh people in need of palliative care in India. They include those suffering from incurable and systemic diseases like AIDS, cancers, those suffering from spinal injuries or those who have had a stroke and age-related illnesses.
These figures are likely to grow because of the increasing life span and a shift from acute to chronic illnesses. It is estimated that 60 per cent of the people dying annually will suffer from prolonged advanced illnesses. This means there will be a sizeable population of the aged who will have several spells of hospitalisation interspersed with long periods of being confined to their beds at home.
In addition to the challenges posed by illnesses, many of the patients in India are extremely poor and do not have access to clean water, food or even shelter. When chronic or life threatening illnesses strike it is a crippling blow for them and their families. There is therefore a crucial need for a system of care at home that can best be built by a community-based palliative care movement.
In Kerala the model evolved after the Pain and Palliative Care Society was set up at the Institute of Palliative Medicine in the grounds of the Government Medical College at Kozhikode. The Institute offered home-care services as an extension of the out-patient clinic but it soon became apparent that the model was not adequate to reach out to the thousands of patients in need. Besides such a model could only provide biomedical relief but could not take care of the complex social, spiritual and emotional issues which patients and their families faced.
The meaning of palliative care has grown and now encompasses far more than its earlier definition of providing pain relief. WHO and other international organizations lay emphasis on providing physical, psychosocial and spiritual needs and to help patients achieve quality of life with supportive families. It was to address such needs and so provide holistic care that the concept of friendly neighbours who have been trained in palliative care took shape. And so the Neighbourhood Network of Palliative Care (NNPC) was formed in 2001.
Trained volunteers help, not just in caring for some 2500 patients each week, but also provide the hugely-needed emotional support. Sometimes they raise funds within the community to assist the patient like buying a water bed which can help prevent bed sores.
Dr K Sureshkumar, who is the head of the Institute of Palliative Care, believes that it is the massive involvement of the local community that has made this palliative care programme such a success and has enabled it to be cited by the WHO as a model for developing nations. Kerala is the only state where the National Rural Health Mission has taken up palliative care and appointed the Institute as the nodal agency where volunteers are trained.
After training, volunteers in the NNPC assume central roles. They provide comprehensive care and improve symptom control by ensuring compliance, they provide free medication and determine side effects. Volunteers do not give medical advice or perform medical procedures but help in procuring prompt medical assistance. Since 2001 the NNPC has grown rapidly and with the support of the state government and various local self government institutions like panchayats and gram sabhas it has set up a network of 230 clinics with over 6 full-time doctors, auxiliary nurses and trained volunteers in all of Kerala's 14 districts.
Because of Kerala's history of social activism the movement has been quick to capture the peopleâs imagination and there are now some 12,000 volunteers - the majority of whom belong to the lower caste. Hearteningly, it is also the youth who are coming forward to volunteer and many of them are under 30. Says Dr K Sureshkumar, "The message which is being driven home is that palliative care is everybodyâs business. The involvement of the police for example, is an ideal way for them to be exposed to another facet of life, to situations other than those encountered in their work."
Dr K Sureshkumar believes the model can be replicated in many other rural areas since the central tenet is community ownership. The major portion of funding for a clinic comes from the community, with donations as small as Rs.20. Donation boxes are placed in shops, bus stations, schools and other public spots. He also acknowledges the support given by the media and the campaigns it has undertaken. Efforts have also been made to integrate it with primary health care.
The palliative care movement is one example of how health services can go well beyond the biomedical model of health and be seen as an affirmative act of living with dignity even whilst accepting that death is an inevitable part of life. Interestingly gram sabhas have begun to raise issues of care for the terminally ill along with those about road conditions and need for electrification.
A most moving tribute to the NNPC comes with the example of Vasudev, a man who had been bed-ridden for years and who lived in isolation. For years he had no one with whom he could communicate. But, says, Dr K Sureshkumar, the community care palliative programme has ended his solitary confinement and anguish.
The success of the palliative care movement has helped to spur an interesting initiative in community psychiatric care. Dr Manojkumar of the Mehac Foundation, which has spearheaded the programme, points out that one in four persons is likely to develop a mental disorder sometime in life. At least one to two per cent of the adult population can suffer from serious disorders like schizophrenia and Bipolar Affective Disorder.
Unfortunately mental health is a vastly neglected field in India and only one per cent of the health budget is spent on mental health. There is a serious shortage of psychiatrists in India and the problem is compounded by the stigmas and cultural beliefs associated with mental disorders. Many mental disorders are ascribed to supernatural forces and there is a lack of faith in modern medical systems leading to a delay in accessing care. Dr Manojkumar points out that one of the most common challenges associated with mental health care is the frequent relapses suffered by patients largely because medication is stopped. This is accentuated in rural areas where people have to travel long distances to access care.
Keeping these factors in mind, Mehac Foundation has begun a kind of decentralised community owned service for the most severely affected in two districts of Kerala which it believes is more likely to succeed. Under the programme unpaid volunteers are trained to act as primary health coordinators. They provide good quality psychiatric care and help to rehabilitate large numbers of poorest mentally ill among the communities. Records are kept electronically and so volunteers ensure quick intervention by the Mehac medical team when relapses do occur. Each patient and family is allocated a specific volunteer from the same community.
Since December 2008 the Mehac Foundation Community Psychiatric Service has provided care to over 450 patients. A heartening story of rehabilitation is that of a young fisherman who was kept chained to his bed because of violent behaviour. Today under the care of his family and volunteer he leads a normal life.
