Keywords: community participation, palliative care, primary care, volunteers
Kerala, in south western India, has two-thirds of the approximately 100 palliative care services in the country. These services cover a population of 32 million in a country of over a billion people. Fifty-seven of the 65 centers in Kerala belong to a network called the Neighborhood Network in Palliative Care. This article traces the development of palliative care in this region of India.
The pain and palliative care society (PPCS) a nongovernmental organization (NGO) began at Kozhikode (a.k.a. Calicut) in 1993. An outpatient clinic was set up at the Kozhikode medical college. Subsequently, a memorandum of understanding was signed with the government of Kerala. The government gave permission to the NGO to work in the premises of the medical college and also agreed to provide a few nonmedical staff and medicines. Other needs, such as providing remaining staff and medicines and finding the remaining expenses to run the establishment had to be met by PPCS.
Since its inception, it was clear to the founders of PPCS that professionals alone would not be able to carry the entire weight of the task of looking after chronically ill people but would also need the support of the community. The clinic itself began with one volunteer and a part time doctor. Other volunteers were encouraged to join the initiative, and at that time they were seen as people to help with the nursing tasks. A volunteer could work in a clinic or a home care programme only during the hours in which these programme were run. Hence, almost all the volunteers worked in the clinics, which often were far from their place of residence, and they often worked in isolation as there were few other volunteers from their locality. So initially, the voluntary activities were clinic centered, and because of this, many who were employed elsewhere could not find a 'slot.'
The first link center of the PPCS was established in 1996 at Manjeri in the neighboring district of Malappuram. The method of setting up a new link center was to train a doctor, or preferably a team of a doctor and a nurse, and to encourage them to set up a palliative care clinic in their area. These 'doctor initiated' clinics had many limitations. First and foremost, they depended in many instances on a few individuals and did not have wide representation in the community where they were set up. Others secondary problems included difficulty getting the volunteers and difficulty raising funds from the locality. But the numbers of link centers did increase steadily.
During this period, it was noticed that the link centers at Nilambur in Malappuram district were more successful in coverage and fund raising. It was also noted that volunteers took the responsibility of planning and organizing the services, raising funds, administering the day-to-day activities of the programmeme, attending to and organizing support for the social and financial needs of the patients, and organizing rehabilitation programmes. The professional's main role was attending to medical issues. It was also observed that persons coming from the same place as the patients were better at prioritising the needs of the patients and individualising the care that was provided.
These observations were discussed with the palliative care teams which already existed in the district and also with new groups interested in setting up palliative care services. Volunteers were trained and given the freedom and support to set up palliative care initiatives. Thus began the NNPC, which are now looking to develop into a sustainable community led service capable of offering comprehensive care to those needing palliative and long-term care.
Initially, there was isolated resistance from health care professionals who thought that volunteers were 'taking over' and 'dictating terms' to them. The issues resolved as soon as it became evident that volunteers were not taking over but were supplementing the care given to the patients by attending to the nonmedical issues.
Today there are 57 palliative care units spread across the six northern districts of Kerala which are involved in the NNPC. These six districts have 11 million people, roughly a third of the state's population. The three districts of Malappuram, Kozhikode, and Wayanad are almost fully covered. The remaining three, Kannur, Palakkad, and Thrissur are partially covered.
In November of 2001, when the NNPC programme was launched, there were seven palliative care clinics in Malappuram district. Together, they were seeing 500 patients at any given time. There were two home care programmes making 8-10 home visits per week, and there were about 50 volunteers who were actively involved in the work. There were almost no locally organized rehabilitation programmes. Today, 4 years after the initiation of the NNPC programmeme, there are 20 palliative care units. This network takes care of about 3000 patients and their families and it runs 40 home care programmes (led by nurses as well as doctors) which make approximately 350 home visits per week. So far, the network has trained 3000 volunteers. One thousand are actively involved in the network's various activities.
Today at many centers the volunteers take the key roles in administration and fund raising, perform nursing tasks like bed sore management and wound care, counsel patients and family, organize social support, and organize awareness programmes in the community.
Many of the volunteers are people who are already involved in other social and political activities. They often have much better administrative and organizational skills than the average health care professional. Even though they may be new to the concept of palliative care, most have already been involved in organising support for people from the local area. The palliative care training makes them improves their skills in caring for the chronically ill.
In our experience, 5-10% of people who undergo volunteer training 'drop out' for various reasons. One-third are very active, and the rest participate in activities now and then. These 'passive' volunteers have the potential to become active if given work to follow up on a regular basis. The training, however, does not go waste as it helps to spread awareness about palliative care.
After the initial training, the volunteers are encouraged to form a local group and to start a home care programme. Unlike clinic centered services, the volunteers can work at any time that is convenient to them and the patient. Since they are from the same locality, they can work in groups and share and plan their work together. Starting with a home care programme also has other advantages. It helps make people aware of the programmeme and it helps generate support. Patients are seen in an atmosphere that is most comfortable to them, it gives the volunteers an idea of the living conditions of the patients, it helps prioritize the needs of the patients and family, and it is an opportunity for recognition and continued learning for the volunteers who join the programme.
A management plan for each patient is set in consultation with the medical team, and professionals look after the medical needs of each individual patient. Psychological and emotional problems are often addressed jointly. The community volunteers try to address the social and spiritual issues. Problems such as the lack of food, poor housing, and children's education are better addressed by people from the same locality than by doctors or nurses.
Such work is quite different from traditional volunteering in palliative care where volunteers are given preset tasks to supplement the existing resources - tasks like front office managing, office work, minor nursing tasks, gardening, etc. They usually do not have any role to play in planning and administering the programmeme and they often work in isolation. Although in a sense this is also community participation, the community may never know what these volunteers are doing. On the other hand, in NNPC, the community - through the volunteers - is identifying and prioritizing the health issues of its own members and then organizing programmes to address them. Some home care programmes go on to develop outpatient clinics.
Wherever the network is active, the continuity of care is maintained, the coverage is improved, patients have easy access to the health care system, and the professionals, the local government and other organizations are supportive.
In NNPC programmes, support from external sources is used only for initiation and not for continued running. If not managed well, external support can lead to reduced local support and prevent the local people from taking full charge of the programmeme. After the initiation of the 'neighborhood network,' there has been a 10-fold increase in the funds available to palliative care, and 90% of those funds are raised locally.
Most of the funds raised from local community are through small donations. Donations might be one rupee a day - or even less - collected from households, shops, or individuals. In Nilambur, for example, the four person crew of each bus that enters the bus stand donates 50 paisa per day. Each day, roughly Rs. 300 are collected from this source alone. Other donors who contribute regularly to the cause are student groups on various campuses and labourers.
The community is willing to support these initiatives because the principal beneficiary is the community itself. People know where the money goes and who in the community benefits. These transactions happen right in the community under its watchful eyes, and any financial aberrations would be picked up immediately. These small scale donations are not only a stable and sustainable source of support, they are also a community feedback on the functioning of the programme.
Other methods of donations include distributing envelopes for collecting money to the public which are later collected by the palliative care team and selling souvenirs. Such ventures also provide an opportunity to spread the word about palliative care.
Support does not only come in the form of money. Many people donate provisions. Volunteers avoid publicity when taking these provisions to the needy families because poverty is not a thing to be celebrated.
When a community takes interest in looking after its members who suffer from chronic as well as incurable illnesses, it often finds it difficult to restrict care to people with only certain diagnoses. Volunteers working in the community detect suffering and the clinical diagnoses are of secondary importance to them. So the types of people who are referred to the palliative care units include those with cancer, HIV/AIDS, paraplegia, stroke, problems of old age and debility, psychiatric illnesses, chronic airway diseases, etc.
Often the expertise and resources to look after these patients is found in places other than palliative care programmes in the community. New initiatives which also interact with other health care groups, institutions, and NGOs are being developed based on the local people's agenda.
One example for such an initiative is the psychiatry service started at Edavanna with the active support from the institute of mental health and neuro sciences (IMHANS), Kozhikode. The community identified psychiatric illnesses as an area needing attention, so with the help of IMHANS, the volunteers were trained in the care of those needing psychiatric support.
Volunteers are involved in tuberculosis control programmes and rehabilitation programmes along with local government. The NNPCs also work with 'Anganwadis' - agencies set up under the directive of central social welfare board to provide care and support to women in their child-bearing years and to preschool children, and with 'Kudumbashree' - a community based, women-oriented participatory approach to poverty eradication under the auspices of the state poverty eradication mission of the government of Kerala. These agencies have easy access to women and families in the locality and they help identify and follow up persons with prolonged illnesses.
The concept of Neighborhood Network in Health Care is being ground tested in Nilambur with the active participation of local government, self help groups, primary health centers, other local healthcare facilities, and palliative care units. A good part of the annual budget comes from local governments (panchayats, municipalities, etc.). Neighborhood networks in palliative care and NNHC programmes can help to identify and prioritize the local health needs and help the local administration to attend to them.
Local governments now provide medicines for many chronically ill patients and provide equipment like wheelchairs and water beds. In some instances, local government even gives some financial support to less privileged people in the community.
The existing heath care facilities are more attuned to caring for acute health problems and they play only a limited role in the care of the chronically ill in the society. Those who need continued supportive care spend their lives not in the hospital, but in the community among their family and neighbors. Hence the community has a major role in the care of these individuals. In NNPC and NNHC, the volunteers are the arms of the community, supporting the patient in collaboration with governmental and nongovernmental agencies.
These efforts can be taken as examples, but not necessarily as models. Whether or not they are reproducible elsewhere remains to be seen.