Good day Dr Suresh, and thank-you for speaking to me.
So everyone is talking about community. Community engagement, community participation, the community-based model of palliative care. Can you tell me, what is your definition of community?
Both terms are quite vague. The problem is that you can use it in any context. You can have minimal feedback from the community and still say that you have community engagement.
What we are doing in Kerala is an example of both community participation and community engagement.
So there is a need to define these terms. And not just ‘community’ but also: What is engagement? What is participation?
When you are looking at the community it has its own relationships, its own dynamics and its own conflicts and interests.
When we talk community, we are also talking about the power dynamics within that community.
When you talk about community engagement or community participation, you need to know: What segment of the community are you working with and what kind of engagement are you talking about, especially since this has become a buzzword.
What you mean by these terms is different with each project. Each project you work with, you will have a different kind of engagement, and a different type of people. For example, we train people to address issues related to palliative care.
You could just train the powerful people in the community so that these knowledge and skills add to the power and freedom and competence that they have in the community.
When we do community participation, we focus on people who do not have the same skills and access as those who hold the power in that community.
The way I see it, at any level, any effort to improve the level of skill in the community will be beneficial and will add to the empowerment of the people in the community.
Why is community engagement so important to the delivery of palliative care?
There are many reasons for that. We all have to die and most of us will go through a phase of dependency on others which will necessitate help and support from those around us.
For a large bulk of the time, the patient is within the community.
Even when you have a region with an exceptionally good health care system, how much time can the team spend with the patient? Perhaps 6-8 hours per week, even if you have the best palliative care team. The patient will spend the rest of the time with family, neighbours etc. That will add immensely to the well being, making sure that those with the patient know what is good for the patient.
The needs of palliative care patients are so complex. Not just physical needs, but psychosocial, emotional, and spiritual needs as well.
If people in the community know how to handle the situation, if they know how to support the patient, especially emotionally, they are not replacing the professional team, but rather supplementing them.
Unless this happens, unless the family and the community are involved, we will be supporting the patient only partially.
If we continuously work with the community, there will be a point where most people in the community know what to do. Eventually we will reach critical mass where the majority of people are aware of palliative care.
We’ve published articles on ehospice about your success in getting the police and political parties involved in palliative care. Can you tell me more about that?
Palliative care is everybody’s business. Suffering is universal. It goes beyond boundaries. Also anybody, lots of people, can contribute something that is of value to help their community, whatever their profession. So you have to take everybody on board.
We can’t say that this is for everyone except political parties.
Also, NGOs have their own politics. The only difference is that civil society still want to get things done, but they are not opting the route of attempting to gain political power.
We cannot restrict access. We can only show them the opportunities, tell them that this is here, we cannot say that this is only for individuals or NGOs. We cannot monopolise palliative care. It is everybody business.
We have been linking with the village level governments. Government workers have been doing palliative care with our team, they got exposed, and then over the years, this message was carried upwards through the ranks, through their political party, until the higher positions request the training.
This year they plan to train 50 000 volunteers. At least 50 000 people will listen to what is palliative care. They will know what is the needs of patients and how palliative care can help.
They are offering us a huge platform and willing listeners and we need to use it.
Critics of the Communist Party of India (Marxist) (CPM) have been suggesting that CPM have entered not with commitment to palliative care, but as a political strategy. My response is that if they decide this is the way to get popularity, we have been marketing in a good way.
Even if they decide to withdraw at a later stage, the skill level will already have been achieved.
Somehow from the social marketing point of view, we seem to have marketed palliative care in Kerala in a very good way.
Last year the newspaper in Kerala, they ran a series on palliative care on their own.
When a new player enters the argument is that other players may find it competitive. We make the space open and it is up to them to join.
If somebody enters the scene and does not deliver, that will be detrimental to them. There may be long-term implications if they do not live up to their commitments.
The primary health system will be integrated in a big way. The challenge is to get the primary health system to integrate with NGOs and the community.
In India, the local government is in charge of the local health care system. We are involved in developing capacity and seeing that these two sectors work together.
There are provisions for this within the national palliative care policy and the local government facilitates these relationships. It is mandatory that they have community volunteers working with them. It is a different way of working. We have to bring them together.
Do you have a role in this?
I’m in a unique position of guiding the process. It is just a coincidence, but it gives me a lot of freedom. I can at least handle the government side. The NGOs are more difficult. They can decide not to listen. There is a possibility of us talking to both groups, but our position is facilitatory, whether they decide to do this is up to them.
When you work with the community, you hold some of the strings but there is a limit to which you can go. You can sensitise them. You can give them training, and then they have the freedom to go beyond. You may or may not like it, but that is how it works.
The advantage of not trying to control is much more than the disadvantage of the possibility of deviation.
It is very tempting to tell them what to do and guide and lead them, but once you give up that role, and see yourself as an external facilitator, you realise that you are unleashing the power of the community. It will go beyond your expectation.
I may be comfortable or uncomfortable with the way that it is going, but it will find its own way.
You need to have faith in the community wisdom, rather than your own wisdom.
The other thing that I have noticed is the way that palliative care is developing here, is to target people not through diagnosis. In other places palliative care is cancer first, then HIV then neurological disorders. But you find that lay people identify suffering rather than diagnosis. The care is spontaneous. There is not a specific decision at any point saying: Now we will do that. The people in the community look at suffering rather than the disease process.
In professional hospice care there are debates about whether to take certain people into care. But when you see from a non-professional point of view, it is a more holistic way of looking at it.
We as hospice professionals have a tendency to look at the disease. In the community, people look at the way that a person is suffering and how to address this suffering. You see the shift from a biomedical model to a social model of care.
Thank-you Dr Suresh for speaking to us on ehospice.
For more information about the 3rd International Public Health and Palliative Care Conference, please visit the conference website.