Collective Compassion
Special Story / Palliative Care
S M VIJAYANAND IAS (Retd.)
A new policy has been formulated followed by a clear Action Plan for community based palliative care to carry out regular house visits for bedbound patients and medicines are delivered freely at home by the Local Governments.
Lie in her bed without moving, just gazing out of the window; O. Henry’s Last Leaf better explains the condition of a palliative patient and how he or she has to be taken care of. Having lost confidence in life and despair in the eyes palliative patience need better physical and mental care and community support. Kerala is the leader in the country in community based Palliative Care offering almost universal coverage to every person in need. This is led by the Village Panchayats and Municipalities, actively supported by Civil Society Organisations (CSOs) and with a lot of individual volunteers supporting the initiative. Interestingly, even political parties run Palliative Care programmes.
Stroke of Serendipity
Initiated in a small way in Kozhikode Medical College by Dr. M.R. Rajagopal and his associate Dr. Suresh Kumar, Kerala’s impressive palliative care started with local outreach gradually attracting voluntary action. In the initial years the processes and protocols evolved. Soon Village Panchayats particularly from Kozhikode and Malappuram districts started showing interest. In 2008 a Policy was approved by the Health Department. Immediately the Local Self Government Department incorporated it into the People’s Plan, initially giving the task of identification of eligible persons and providing care services to the Kudumbashree network. Thereafter the Local Governments hired Palliative Care Nurses in all the Primary Health Centres (PHCs). Later, with the support of the National Health Mission (NHM), secondary Palliative Care Nurses were appointed in the Community Health Centres (CHCs). A policy of none left behind is followed and after identification of eligible persons, outreach services are provided through the Palliative Care Nurse supported by Junior Public Health Nurses (JPHN), Accredited Social Health Activists (ASHA) and, wherever needed, the Doctors. Regular house visits are carried out particularly for bedbound patients and medicines are delivered at home. Most of the medicines are purchased by the Local Governments who also supply comfort devices to the needy patients. After a decade of experience a new and improved Policy has been adopted followed by a clear Action Plan. Now the Palliative Care programme has a fully functional model and is well institutionalised. Of course, there is need for greater effort in urban areas and a referral system needs to be improved.
The most critical element of the programme is the voluntary effort by organisations and individuals
The important elements of the new Policy and Action Plan include the following: 1. List of medicines and comfort devices to be provided 2. The process of planning from below 3. Setting up of neighbourhood network of Palliative Care with Ward and Local Government Level Committees above it 4. Focus on livelihoods 5. Accepting the need to support the caregivers 6. Citizen education 7. Comprehensive capacity building 8. Registration of CSOs at the Local Government level for provision of psycho-social support 9. Accreditation of NGOs for providing medical support at the State level 10. Setting up of a Palliative Care Grid
Empathy Institutionalised
It is no exaggeration that India looks up to Kerala. Already Tamil Nadu has adopted substantial elements from the Kerala experience. Karnataka has recently launched a pilot under the leadership of Panchayats. Himachal Pradesh has declared its intention to suitably adapt the Kerala Model, but with focus on Village Communities. States like Chhattisgarh, Odisha and Telangana have evinced keen interest. Beyond India it has interesting lessons to offer to developing countries also. The funding mostly comes from the Local Governments with some support from the NHM. It is estimated that more than 1/3rd of the expenditure would be in the form of voluntary contribution. The voluntary effort by CSOs and individuals and the entire community system by providing psycho-social support to the patients and, food also wherever needed; perform their best as the role of the character Behrman did through his masterpiece as O. Henry portrays in his short story The Last Leaf. They work over night from the last leaf falling. The author is former Secretary, Ministry of Panchayati Raj, Government of India and former Chief Secretary, Kerala. He is currently the Chairman, Centre for Management Development
Tamil Nadu, Karnataka, Himachal Pradesh, Chhattisgarh, Odisha and Telangana are emulating the model of Kerala’s Palliative Care