On the world hospice and palliative care day in 2010, after a speech of his was broadcast on the state radio, Narayanan Puthukkudy, President, IAPC (Indian Association of Palliative Care) Kerala got a call from a tea shop owner in Muzhakkunnu village, Kannur. It was about a woman who had been bed ridden for more than 35 years and badly needed some sort of help.
When Narayanan and some other volunteers visited her hut next day, Radha (Name changed) was lying on her stomach on a cot. There was a hole on the cot for her to urinate, and a bucket was kept under it. Her sister Seetha (Name changed) had gone for work. Witnessing her pathetic condition, they decided to shift her to some medical facility. Radha had a horrific accident 35 years ago, when a wooden log fell on her leaving her paraplegic. She could not even turn over while lying on the cot, and her sister who was the only care giver, unable to help.
52- year- old Radha who spent almost six months in the hospital after the volunteers took her, returned home in a wheelchair. ‘Now she is 62 years old and moves around using the wheelchair. She regularly calls me, and it’s one of the satisfying moments in my life as a palliative care volunteer, says Narayanan.
This is a simple example of how the palliative care system works in Kerala. The Kerala model of palliative care, which is mostly community-based, is often recognised as a very sustainable initiative and the best in the country. This has also been hailed globally as a great example for resource-poor countries.
‘Kerala’s palliative care is sixteen times better than the national average in terms of accessibility, says Dr M R Rajagopal, who is considered to be the father of palliative care in India. There are limitations to the studies and there might be inaccuracies in the numbers, but there is nothing better than this in the country at this point in time. Many journals have cited Kerala as a globally acclaimed model for health care for the future’. There are more than 1600 institutions that provide palliative care services across the state which means, 80% of the 2000 palliative care services in India, are in Kerala.
Palliative care services are available in every district in Kerala, covering over 70% of those in need, as compared to the national average of 23%.
The evolution of palliative care in Kerala has been anchored predominantly on a community-based approach, even though it was started as a civil society organisation (Pain and Palliative Care Society) by a dedicated group including Dr. Rajagopal, Dr. Suresh Kumar K and Ashok Kumar, based out of the out-patient department of Government Medical college hospital, Kozhikkod, relying upon the clinical model of palliative care. Palliative care expanded steadily in Kerala with the concept of Neighbourhood Network in Palliative Care (NNPC) gaining traction.
The NNPC ‘s goal is to develop community-based service not only palliative care but comprehensive long-term care also. The NNPC focusses on the empowerment of local communities to look after the chronically ill and end of the life patients which is the only effective and sustainable way of providing care in a closed society like Kerala.
According to Dr Suresh Kumar, ‘Neighborhood Network in Palliative Care does not try to replace the traditional health care professionals with volunteers. Instead, it attempts to supplement psychosocial and spiritual support by adding volunteers from the community who have been trained by doctors and nurses’. In an presentation titled Palliative care as primary health care, he explains that ‘community involvement’ through the NNPC in 2000, was the first paradigm shift in palliative care in Kerala. The second one was the formal role of Local Governments which started in 2007.
The Institute of Palliative Medicine which was launched in 2001 by him was later designated as the state level coordinating and resource centre to implement the first palliative care programme in the country.
With the inception of Pallium India, Thiruvananthapuram, an NGO with Dr Rajagopal in the helm, palliative care centres have been established in 10 more states. It was a representation submitted by this organisation to the Government of Kerala, and the Government of India that became instrumental in formulating a draft policy for the state in 2008.
It was in the first decade of the century, the community organisations got their act together to form neighbourhood networks and started involving in palliative care. Now almost 20 years down the lane, not only community organisations but political parties also have come forward to form palliative volunteer force. Karuna, a palliative care initiative chaired by former state minister and CPI(M) leader Saji Cherian operating out of Chengannur assembly constituency of Alappuzha district, has more than 5000 active volunteers. ‘We have units in 177 wards and we are tending to more than 7400 patients of which 570 are bed-ridden and need medical care more than thrice a week. For this we have ten ambulance units with separate nursing staff for each of it’ says Saji Cheriyan who represents Chengannur constituency in the Kerala assembly. Karuna which has more 2500 active members does not take donations but a one-time membership fee ranging from INR 500 to 1000000. “There are several types of memberships, with the highest fee being Rs. 1000000/- for a life-time one with benefits .The organisation has a scheme providing free medical support for the life time members” says Cheriyan. CPI(M) is running another large-scale palliative initiative, Initiative for Rehabilitation and Palliative Care (IRPC) led by party state committee member and Ex- MLA, P. Jayarajan.
Indian Union Muslim League also has many palliative care institutions including care homes in Malappuram and Kozhikkod districts. Community and religious organisations like Kerala Nadvathul Mujahideen, Jamaat- e Islami and various Church congregations across the state have very active pain and palliative initiatives. Sewabharati, the RSS affiliated organisation another notable name in the field.
The state Government, with three-tier panchayat apparatus working as an enganche as in football, has effectively integrated the palliative care with the state healthcare system. According to the palliative care policy, formulated in 2008 and updated in 2018 the neighbourhood networks, in association with the NGOs are entrusted to identify patients’ needs and provide home care at the grass root level.
According to the Report of the Lancet Commission on the Value of Death, 2022, The model that has developed in Kerala is an example of profound systems change. It has succeeded in changing narratives around death and dying, building a powerful community response, increasing the number of people able to access care, influencing state and national policy, and challenging models of care globally. It has succeeded in redefining care at the end of life as a public concern beyond services and professionals.
‘There are many people who are committed to help others in every community. What we are doing is, opening the doors of the health care to them. The doors were more or less closed and we are now welcoming them. This is the area where we get praises globally for the end-of-life care. But I should highlight that that is not only relevant to end-of-life care but the entire health care system of Kerala, says Dr. Rajagopal.
‘The role of political parties and religious institutions in palliative and end of life care is natural and very relevant. Having said that, we should not forget that it is a tight rope walk which could go south if vested interest of any sort kick in. We should be very careful before romanticising that any community for its work and say that everything they do is perfect. Precautions must be taken to check vested interests or greed of power. There must be strong ground rules or else the movement will get corrupted even before we know it’ Dr Rajagopal adds.
E P Abdul Azeez and G Anbuselvi in their research paper on Kerala Model of Community-Based Palliative Careobserve that the uninterrupted patient services, economic-self-sufficiency, and volunteering efforts are the key factors contributing to the overall sustainability of palliative care operations in Kerala. These factors are found as the dimensions of sustainability, mutually inclusive and specific to Kerala’s model of community palliative care.
Rajeev Ramachandran is an independent journalist based in Kochi, Kerala
