Community programmes in palliative care: What have we learned?
Keywords: palliative care, empowerment, community participation
The Neighbourhood Networks in Palliative Care in North Kerala have been instrumental in providing meaningful coverage of palliative care to one third of the population of Kerala. This experiment in community ownership has also been a rare learning opportunity for many of us professionals involved in these projects.
Working with people helps to generate, field test, and cross check some of the basic concepts in organization. What follows are reflections by one of the facilitators of the project on some of the things learnt and unlearnt during this process.
Those in the field of palliative care notice the very common use of terms such as 'community participation' and 'volunteering'. On a deeper level, the terms 'community' and 'participation' mean different things to different people. The differentiation between community based programmes with a token involvement from the local people and community development programmes with involvement at all levels is not usually made.
As Dudley points out, 'presence of "participation" is now effectively obligatory in all policy documents and project proposals from the international donors and implementing agencies. Community participation may have won the war of words but beyond the rhetoric, its success is less evident. Part of the problem is clearly political because true participation is a threat to powerful and vested interests'.
After seeing a large number of palliative care initiatives with various levels of community participation and seeing the transition of initiatives from one level of participation to another, many of us agree with Dudley's observation about true participation being a threat to powerful and vested interests. This reluctance can be about having to share power within a community, a group, or a team.
'Empowerment' is probably one of the most commonly misused terms in palliative care. At every national conference of the Indian Association of Palliative Care I have attended, somebody mentions empowerment in a presentation. The word is often used to denote a simple training, educational or awareness programme.
Webster's dictionary, on the other hand, states that to empower is 'to give official authority or legal power to'. The word was popularized by William Penn, the great hero of American liberty in the 17th century. The word 'empower' is actually derived from 'en' and 'power'. The prefix 'en' meaning 'cause to be' or 'make'. It took years for many of us working with community programmes in palliative care to learn something obvious - that there is no empowerment without some one in power losing part of their power. There is no community ownership without empowerment. Generally, when people are empowered, professionals lose power.
In a recent session on sustainability of community programmes at a 'train the trainer' workshop in Calicut, there was a discussion of the hurdles in the path of effective community participation. This group of experienced volunteers strongly felt that the most important stumbling block was a strong, hierarchical, organizational structure with powerful people at the top. Very often, these are hard working people who consider themselves indispensable.
The sociologist John Macdonald states that modern medicine, by its very nature, is nonparticipatory. Palliative care workers are aware of the problem created by the unequal power relationship between the doctor and the patient. But we also come across individuals, many of them well meaning people, who complain about the frustrations of doing it all alone without realizing that they are more part of the problem rather than part of the solution.
The number of people living in this world in absolute poverty, with income less than $1 a day is more than 1.3 billion now and is growing steadily. The cost of drugs and health care is steadily going up, resulting in fewer and fewer people having access to any type of health care.
While working for the care of the terminally ill in a 'third world' community, one can easily see why palliative care is frequently not a priority for them. Poor communities face numerous other problems such as infectious diseases, lack of drinking water and lack of sanitation.
Such communities are often also socially excluded, and social exclusion is a broader concept than poverty. It means not only low material means but also the inability to participate effectively in economic, social, political and cultural life. This results in some form of alienation and it distances the communities from mainstream society.
In such a situation, sustainable care of the incurably/terminally ill cannot be done in isolation.
The palliative care worker has to identify and share a common platform with other initiatives working on the other problems in the area. One cannot push forward without considering existing issues in the community and their priorities.
Our communities have shown that they are capable of organizing services and offering care if empowered to do so. These are movements with rich social or political capital and high levels of trust, reciprocity and good community networking.
Holistic health care
The treatment of diseases should address the social dimensions of the illness in addition to the medical. Good palliative care cannot be delivered solely through the medical establishment because social issues demand intervention by others in the community.
All palliative care programmes within the NNPC network have attained financial sustainability within a few months of initiation. This started happening in palliative care when the focus was shifted from 'fund raising' to 'resource mobilization', which included mobilizing human resources. Contrary to what we believed in the past, we now realize that financial issues are not the major problem in the development of community programmes. Involvement of people is more important.
Facilitating the development and sustenance of community owned programmes are hard work. We have found that most people who show an interest in the programme will be those who are already involved in or have experience in social or political work. When they work together, they bring their skills, experience and expertise into the programme. This is a good thing. But these volunteers also bring their biases, beliefs and conflicts with them. This makes the formation of a heterogeneous group a challenging task.
If an already established group in the community takes interest in the programme, it makes the process easier. But then the problem becomes the exclusion of other community groups. The spirit and extent of community participation suffers if the programme is seen as belonging to a particular group, leaving the rest of the community to fit themselves into the role of consumers.
Programmes with community participation do not develop to fit a preset plan. Many facilitators are uncomfortable working without a blue print, but we have seen that there is a huge difference between asking people to work under you on your agenda and working with people on an open agenda. The NNPC initiatives have succeeded mainly because they have adopted the latter approach and related strategies.
Regular training programmes are the most important components of palliative care programmes with community participation. They are absolutely vital for developing, sustaining and improving the necessary skills for patient care and for organization. We have also seen that programmes tend to get stale and volunteers may drop out when the stress on training is compromised.
Another observed reason for dropping out is the perceived absence of a role. The success of the programme depends heavily on the ability of the team to realign regularly in order to find clear roles for new entrants. A spirit of social cohesion, social support, social justice, and democracy in the community are the qualities that sustain NNPC programmes, and it takes a continuous effort to maintain the dynamism of the programme.
This heavy dependence on the spirit of a social movement is the strength and also possibly the weakness of Neighbourhood Networks in Palliative Care. In the absence of regular activities to realize these basic principles, such community initiatives can slip back to bureaucracy or can simply disappear. Fortunately, in most instances, NNPC initiatives have been showing a trend towards growth and expansion, and demonstrating potential benefits not just to palliative care, but to the community as a whole.