The involvement of Local Self Government Institutions (LSGI) and active participation of the community are identified as the key components in the development of palliative care in Kerala. This was highlighted in the workshop organized by National Rural Health Mission (NRHM) at Ernakulam on 11th and 12th of February 2013 to share “Public Health Approach in Palliative Care- Kerala Experience”.
“In Kerala, 850 LSGIs have already launched palliative home care service. In 2013, all the 1000 panchayaths will implement this basic service in palliative care,” said Dr N. Sreedhar, Additional Director of Health Service and State Programme Manager, NRHM.
“All LSGIs are running this project with community participation. NRHM is planning to initiate more training programmes in palliative care through the Kerala Institute of Local Administration (KILA) and Health Service. NRHM is also planning an impact study which will help to assess the practical aspects to replicate the project in other regions in India,” he said.
Dr P. K. Jameela, Director of Health Services, Kerala sated that: “The home care project has covered 80,000 patients in 2012 in Kerala. Tertiary and secondary level programmes have been started in 74 government hospitals. Training centres were started in 16 places. To start separate department for palliative care in Medical Colleges in Kerala is under consideration.”
The workshop started with a description of the evolution of the Kerala model in palliative care by Dr Suresh Kumar, Director, Institute of Palliative Medicine, Calicut, which is the state resource centre for NRHM ArogyaKeralam Palliative Care Project.
Dr Kumar discussed the three major paradigm shifts in the development of community based palliative care services in Kerala.
According to him, a dedicated attempt to increase community participation was launched in 1999 bringing together 4 civil society groups- the Malappuram Initiative in Palliative Care, Pain and Palliative Care Society (Calicut), Alpha Palliative Care Clinic (Thrissur) and Justice Sivaraman Foundation. This was portrayed as the first paradigm shift in the development of community participation.
Dr Kumar noted that a critical mass of volunteers was achieved through widespread training in the community to any interested groups. This led to different groups in the community taking up palliative care in different models. The essential ingredients for the palliative care programme in the community are medical, nursing, trained volunteer and sensitized volunteer. The reported impact was increased community self-reliance as well as passive pressure on the government.
He continued by noting that in the context of interaction with government, the options are ‘Exit’ (disengage from government), ‘Voice’ (active engagement) and ‘Straddling’ (fluctuating between the two options).
“This can be seen as the background to the second paradigm shift, namely the involvement of Local Self Government Institutions in palliative care propelled by the State policy. This had the result of political workers and parties being interested in palliative care. The recent interest by political parties in active participation in palliative care can be viewed as a potential third paradigm shift,” he said.
Dr Kumar identified 4 major challenges before existing community model in Kerala. They are:
- Maintaining community participation when government gets involved
- concerns about involvement of political society in what is considered a civil society domain
- deepening involvement of the community as palliative care providers and
- establishing quality and standards.
There was a heated debate on the involvement of political parties in palliative care. The concern raised was about politicizing the service. But most of the delegates welcomed this move. “The involvement of political parties cannot be considered as politicizing the process. Rather there are many positive aspects if the political parties, especially the youth wings of all political parties get involved in the activities,” said Dr Muhammed Asheel, Assistant nodal officer of the endosulfan rehabilitation wing, citing his experience in the rehabilitation process in the Kasargod district for those who effected with Endosulfan toxicity.
The workshop was inaugurated by Mr Sheik Pareed, Ernakulam district collector. Honorable Minister of Health Mr V S Sivakumar conveyed his recorded message wishing the workshop well and highlighting the Government support through policy and institutionalization of palliative care.
Dr Mathews Numpeli, (Medical Officer for NRHM Palliative Care Project) described the structure of primary, secondary and tertiary levels of the palliative care programme in the public health system, especially the involvement of the Local Self-Government Institutions in palliative home care services. The evolution of community based organizations in the field of palliative care was outlined by Dr Divakaran (Director, Institute of Palliative Care, Thrissur).
“Kerala experience: a true reflection of WHO’s concept”
Dr Jan Stjernsward and Dr Cecilia Sepulveda of World Health Organisation spoke about the WHO approach in palliative care and non-communicable diseases. They pointed out that the Kerala experience was a true reflection of what the WHO considered community based public health oriented palliative care.
The workshop also discussed the proposed National Programme in Palliative Care, developing standards and quality in palliative care, training programmes in palliative care as well as innovative experiments (such as those of student volunteers in palliative care, rehabilitation in the community, community psychiatry and political parties in palliative care) that were offshoots from the public health approach in palliative care.
The programme concluded by reflections from national and international delegates about the replicability of the Kerala model elsewhere. David Praill (Co-chair, Worldwide Palliative Care Alliance) addressed the challenges in replicability and highlighted examples of UK initiatives that were inspired by the Kerala model. Plans for collaboration with various national and international projects are on the cards, while strengthening those collaborations that already exist.
Dr Junaid Rahman (DMO Ernakulam), Dr Bibin (State Nodal Officer in palliative Care), Ms. Seena (NRHM Palliative Care Consultant, Ernakulam) and Dr Annie (Superintendent, General Hospital Ernakulam) were dignitaries at the valedictory function.