The role of religious, social and political groups in palliative care in Northern Kerala
The local community has played an important and central role in the development and determination of palliative care services in Northern Kerala. This article looks at the history of the collaboration and how palliative care services have evolved over the past 4 years from 2001 to 2005. The contribution of groups such as nongovernmental organizations, charities and religious groups is outlined and benefits gained by each side discussed.
Keywords: community participation, palliative care, neighbourhood network in palliative care
The state of Kerala is known for its political vitality and social awareness. It has the highest newspaper-consumption per capita of any state in India and each morning, animated discussions are heard in tea shops and buses as the daily news is reflected upon. It comes as no surprise that palliative care services too have been infused with this political fervour. They are firmly enmeshed in Kerala's active social, political and religious framework.
Palliative care services have altered dramatically since the first clinic started in 1993. The constant acquisition of new faces and collaborations with new organizations has meant the services are constantly evolving in time with, and determined by, the needs of the local community. The diversity of the groups involved reflects the diversity of the communities they serve. This provides a vast reservoir of appropriate skills and resources on which to draw from in order to meet new challenges. Many see this as the reason for the successes of palliative care services in Kerala. The richness afforded by the collaboration gives it a unique stability and resilience.
The Regional Cancer Centre in Kerala had a pain clinic from late 1980s. The palliative care movement in Kerala began in earnest with the formation of the Pain and Palliative Care Society (PPCS) in 1993 by a group of doctors and volunteers committed to relieving the suffering of cancer patients and those with chronic illnesses. It started as a small outpatient unit initially seeing two or three patients a day. Doctors and nurses ran the clinic, with volunteers playing a subsidiary role.
In 1996, a doctor in Manjeri, Malappuram, became interested in providing services for the terminally ill in the locality and initiated collaboration with the PPCS. He was part of a Muslim religious organization active in many social, educational and cultural fields and drew on the existing structure of the organization to develop the clinic. A diverse range of people from the community were involved from the outset. The clinic was very successful in providing palliative care services to the community and volunteers played an active role in planning and delivering services. The project became popular with the local community and it became financially independent through their donations. In 1997, the second clinic in Muttil in Wynad district was initiated by a Hindu religious group. In a short time, the Catholic Church showed an interest in the project. This resulted in the establishment of palliative care clinics in Wynad, Ernakulam and Idukki districts.
The Neighbourhood Network in Palliative Care (NNPC) was started in 2001. It was an attempt to determine the reasons for the success of the two satellite centres at Manjeri and Nilmbur, and to actively replicate the phenomenon in other districts. A crucial aspect of the project was to try to mobilize people from the local community. After a period of training, they would be supported in setting up centres providing palliative care and to go on to develop the services as dictated by their local community. In the first stage, local groups providing similar services, such as basic healthcare and social projects were approached and became involved in the NNPC. Other, larger groups working in other areas such as literacy and education were subsequently involved.
In the 4 years since the inception of the NNPC, it has evolved and developed. A hugely diverse range of groups now contributes, both through official collaborations and unofficial links. The network covers one third of the population of Kerala, through more than 50 palliative care units. In some districts this results in coverage of over 70% of those in need of palliative care.
People enthusiastic about a new community project are often already involved in religious, social or political work pertaining to the community. This has been the case with the volunteers in palliative care in Kerala.
Religious groups are an important and integral part of the NNPC, having been involved from the outset. The Mujahid Muslim organization (counterpart of the Wahabi - Salafi movement) was involved with the first clinics in Manjeri and Nilambur and remains an important resource in Malappuram district. The Mujahid movement was initially formed as a common platform for many Muslim groups in Kerala involved in social and educational activities and as a result represents a highly motivated and socially aware group of people. Although there is no formal collaboration with the NNPC, and palliative care is not part of its policies, its members are very active in the organization. Through doctors, nurses and a large number of volunteers, they raise public awareness of palliative care and its availability at the centres. They help with fundraising and encouraging new volunteers.
As mentioned earlier, the first clinic in Wynad district was initiated by a Hindu organization. Their volunteers in tribal areas of the district have made it possible for palliative care to make inroads into the predominantly tribal population in the district.
The Christian church has an input at different levels. There is an inpatient centre run by nuns in the Calicut district and many church based groups run palliative care clinics, with input from other groups. Nuns also volunteer independently in clinics and centres not officially run by the church.
Kudumbashree means 'prosperity of the family'. It is a state-sponsored, self help organization for women aiming to empower, educate and reduce poverty. It started in Alappuzha in 1993 and a project in Malappuram followed quickly. The Government of Kerala scaled up the project in 1998 to cover the state as a whole and set the target of alleviating poverty by 2008. Each village has a branch where women form 'Neighbourhood Groups', comprised of 20-45 families. They design plans for poverty relief, education and improvement in female and child health. The Neighbourhood Kudumbashree group then facilitates their training and provides loans and support for the setting up of 'micro-enterprises' such as soap and basket making. The organization provides the support for the initial development of the venture, but the women subsequently run the business independently.
Health awareness is an important aspect of Kudumbashree. The coordinators of the NNPC met with those running Kudumbashree at state level and discussed the possibility of collaboration. Subsequently, talks about the NNPC and palliative care were given at the meetings, and those interested became volunteers. Today a large number of the volunteers in NNPC come from Kudumbashree and indeed they are now fully responsible for running a number of palliative care units.
Aspire is a support group for people affected by quadriplegia and paraplegia. The commonest cause for these disabilities among young in Kerala is accidental falls from coconut palms while collecting the fruit. Aspire provides treatment and rehabilitation for people affected by disability. An official link has been created between NNPC and Aspire. Volunteers from NNPC determine people in the community who may benefit from the services Aspire provides wheelchairs or small grants to set up businesses. It is a mutual collaboration, where both organizations utilize each other's services to give the best care to their patients.
The National Literacy Mission started as a project in Ernakulam district in the late 1980s, designed to teach people, especially the older generations, to read and write. The teachers were volunteers from the local community and helped people to develop the skills they need to read and write. The project was phenomenally successful; such that in April 1991, Kerala declared 100% literacy in the state. There are now plans to extend the teaching to fifth to sixth standard.
In 2002, collaboration began between the Literacy movement and the NNPC. Volunteers began working for the NNPC, doing home visits and helping with fundraising and administration. A community-based study was recently conducted by the NNPC in Malappuram, designed to quantify the need for palliative care among people dying in the district. The project was designed, completed and analysed by volunteers from the local community, largely composed of literacy mission volunteers.
The campuses in Kerala have long had an active role in community projects and volunteering. The National Service Scheme (NSS) aims at rousing social awareness through community service. Unofficial links first developed in universities in Northern Kerala, with students volunteering in clinics and becoming active in fundraising. The NNPC formed an official collaboration with the NSS and the 'Palliative Care in Campus' initiative was created. It enjoys popularity in many universities and the student volunteers are playing an increasingly important role in the organization. The initiative, organized by students themselves, provides structured training to students in campus and coordinates the activities of the groups.
Many other groups like local libraries, sports and arts clubs, local units of political parties and merchants association are also involved in the activities at different levels. Their involvement ranges from supporting the existing groups in different areas like fundraising, awareness and rehabilitation to organizing palliative care units in different areas. Two examples of such collaborating organizations are:
The Forest Protective Staff Association is an organization of the government employees working in the forest department. This organization took the responsibility of planting trees in the compound around the Institute of Palliative Medicine (IPM) in Calicut and maintaining the gardens. After seeing the work carried out at the IPM, many of the members became volunteers.
The Bankmen's club is an organization that provides social and leisure pursuits for bankmen. It is associated with the Pain and Palliative Care Society in Calicut. It mainly helps in fundraising and support of events such as inaugurations. The close collaboration and exposure to what the PPCS achieves has prompted many of the members of the Bankmen's Club volunteer after their retirement.
Since the initiation of the NNPC, there has been much discussion about and analysis of its structure and organization and the reasons for its successes. A mistake that is often made is to rely too heavily on the all-encompassing term 'NNPC'. It is incorrectly used to refer to a homogenous, centralized organization, devoted to creating identical satellite centres according to its own, defined principles. This article has hoped to illustrate the very heterogeneous and diverse nature of the organization, and therefore to illustrate its primary strength.
The units under the umbrella term of the NNPC differ widely according to their organization, priority of services, delivery of services and the types of people constituting the unit. Some centres are run almost exclusively by one organization, for example a religious group. This has the advantage that the group will come with its own stability, leaders and mechanisms for initiating and supporting projects and dealing with problems. There are obvious downsides, however, as a close group can be intimidating to others wishing to become involved and may influence uptake of services by patients in the community. If a programme becomes labelled as 'belonging' to a certain religious or political group, it will destroy the community participation for the project, and it will simply become a subsidiary project of the parent organization.
A second type of group identified is formed by people from different organizations. These groups need more time to become established, to identify leaders and to work as a team. The diverse backgrounds that the people may come from can serve both to enrich the project and as a source of conflict as volunteers often come with specific objectives. In centres where these types of group exist, it has been noted that they often concentrate on different aspects, such as fundraising, administration or medical care. In situations where conflicts have arisen the groups have been able to resolve them through discussions and such exercises have proved to be good opportunities to gain insight to organizational dynamics.
Then final type of centre is comprised of individuals not affiliated to any organization. Often they were working independently in the field of health or social work. The process of initiation of this group often difficult as they are only united by the geographical area and need more time to develop as a group, but the skills and experience they may bring to the group can mitigate for this drawback.
The question of what is gained by the collaboration is difficult to respond to, as it necessitates generalization about a hugely variable answer. The volunteers coming to the NNPC from other social, political or religious organizations often joined them for reasons such as: a wish to influence social change; to care for the sick in society; to fight against poverty; to develop a sense of self identity or a sense of community identity. All these are valid motives for joining voluntary groups per se and certainly the NNPC. It provides real opportunities for volunteers to realize these personal goals whilst performing a valuable role in providing both palliative care and health care for the local community.
One of the founding principles of the NNPC is that issues faced by people with terminal and chronic illnesses are social problems with medical components, rather than the converse, commonly held view. Palliative care cannot be separated from its broader social, political, religious and cultural ties and indeed satisfactory services will optimize the utilization of these resources. When this is achieved, the rewards are comprehensive and wide ranging and involve the patients, volunteers and the community as a whole.