The palliative care movement in India

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Published: 31 Mar 2017
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Dr M.R. Rajagopal - Pallium India, Thiruvananthapuram, India

Dr Rajagopal talks to ecancer at IAPCON 2017 about recent changes in palliative care strategy at the national level in India, particularly around access to opioids.

Unfortunately, healthcare is managed at state level and change takes time to implement and access to pain relief medicine in India still lags behind the global average.

Palliative care education is lacking at all levels although it is now easier to educate healthcare professionals via e-learning using resources such as the ones ecancer produce.

Dr Rajagopal also discusses the importance of involving the community and community volunteers both in providing palliative care and in advocacy at a local level.

Although access to palliative care is improving throughout India it is still very much solely a provision for cancer patients and there is a need to widen the provision to include all health related suffering.

We are headed in the right direction, I believe. I say that because, though slow, it has been systematic in the sense we have concurrently addressed the three sides of the triangle, namely education, access to essential medicines, particularly opioids, and the policy and implementation angle. Especially these last five years mark a time of major change. The government of India formulated the National Palliative Care Programme, the national programme for palliative care. It’s not a policy but it’s a strategy for a certain period of time. The parliament simplified the regulations that control access to opioids for pain relief. Tremendous things.

Has it changed things on the ground? Not yet. With both of these the policy and the legal legislation is at the central government level; health is a state subject so 29 individual states have to implement it. In our country policy or the law does not automatically mean implementation. The gap can be huge and that gap is filled only with constant advocacy. It took us two decades to get these two things done, maybe it will take another 200 to get there but we will get there. We are where we are because we have been persistent and there are a lot of persistent people out there. I’m sure we’ll keep working and I would like to believe that now that the law and the government strategy is in place maybe we are entering on a steep side of the curve; maybe it won’t be so slow in the future.

That is the positive thing. Unfortunately we have not done so well with the education angle. Medical education is controlled by the Medical Council of India, nursing by the Indian Nursing Council. These two bodies have to incorporate palliative care into undergraduate as well as postgraduate medical and nursing education, that has not happened. We thought that a change at the national level is going to be very, very hard.

Is there a need to educate the population, not just doctors, about palliative care in India?

Because the country is so vast and because education, again, is governed by individual state governments we cannot have one single strategy which will change everything, we need multiple. So among that naturally it has to happen through universities, no doubt, but we cannot wait for that to happen and for two generations to effect a change. So all angles are necessary like what ecancer is doing. What is new is the electronic platforms for learning and unless we exploit that it’s going to take a long time. Like particularly the changed legislation for opioid access – to be implemented it necessitates new learning by all doctors and nurses. How are we going to do that in such a vast country? Maybe what you have brought up, the electronic learning, maybe that is a big part of the answer. I won’t say that solves everything but that’s a big part of the answer. And what I like most is there is famous line by our poet Tagore, the Nobel Laureate, he wants our country to rise to a level where knowledge is free. More and more we are seeing that education is something that has to be bought at a high price and having free access, that’s a tremendous thing.

How quickly do you think policy changes will affect opioid availability?

Very quick, if we can get the essential education to all the doctors and nurses. Without that the regulatory bodies mean nothing. OK, you don’t need the complicated licences but still you have to ask for it and once you get it you have to know how to document it properly; you have to learn how to use it. Any good thing can be used also as a weapon for destruction, including opioids. So that was essential, the change in the legislation was essential but it will be meaningless unless we couple it with professional education. Absolutely. Education now becomes even more important than it was two years back.

Could you discuss the original vision of the palliative care movement?

The vision of the palliative care movement was to shift from the disease focussed system which the healthcare industry was more and more focussing on to the person and to suffering. It’s a cruel paradox that as healthcare grows it actually tends to cause a lot of suffering, destroying families, destroying the next generation. That had to change. So we wanted to look at suffering as an entity and then we discovered palliative care. At one time in the ‘80s there was a time when we had not even heard about it when we were addressing suffering. Thanks to Dame Cicely Saunders that was there. So it was essentially a person and family oriented treatment of suffering. But that meant that the partnership between the patient and the family and the medical system had to come into place.

So when we started with maybe three patients in the first week the core team included a doctor, a nurse and two volunteers. Now the first volunteer, his name is Ashok, his role was crucial. He could see things which we could not see because we had these blinders of medical and professional education. He could see the view of the common man and the involvement of the community became another crucial step.

Is there palliative care in each state of India?

In Kerala, in every part there is some palliative care activity; there is some involvement of the community, great, happy, achieved excellence? We have not - we have achieved excellence in having some community participation and some outreach but the one single indicator for access to pain relief that the world has agreed on is per capita morphine consumption. In Kerala where there is some palliative care everywhere the morphine consumption is only one-fourth of the global average. It’s only about one-hundredth of what is there in the UK, or less, which most of the world would consider an OK sort of thing.

So we have achieved some things; we need to build it up. The community is so much involved with the professionals not so involved, not so educated in palliative care which makes ecancer all the more relevant. Because that is where now we have to concentrate on. The people are willing to help and that can possibly grow in the rest of the country if we are able to couple these two factors.

Could you talk a little bit about Pallium India?

When our palliative care work was about ten years old in Calicut some of us thought that the growth was mostly confined to Kerala and a few metropolitan cities elsewhere; it was by nowhere adequate. So a few of us created Pallium India in 2003 with a view to concentrating on the rest of the country. Concentrating on two things – on advocacy, advocacy with the government for integration into the healthcare, for the law, legislation, for education and so on but also at creating some palliative care centres, at least one or two, in states which still then had either no palliative care or negligible palliative care.

So these are the things that we have been doing and the advocacy has been quite successful in two areas, not so successful in the education. We have worked with institutions in various parts of the country to establish something like eighteen palliative care centres in various parts of the country. Pallium India doesn’t run them; the local organisation has ownership. Just as in the network in Kerala individual organisations own that service and we are facilitators.

So those are some of the things that we did. We also catalysed the development of three palliative care training centres in the last few years. Until then most people had to travel from the north of India, travelling 3,000km to the south of India for training. Now there are other good training centres in Hyderabad, Ahmedabad and Jaipur. We hope to continue to focus on advocacy but also on education and development of palliative care centres in different states.

What do you believe still needs to be done?

That effort also makes me hope that we are entering on a steep side of the curve. The world is recognising the value of palliative care, nothing else, recognising that palliative care is a medical and social movement that is helping to reduce a significant chunk of suffering from the community and that acceptance by a non-medical organisation, in this case visual media , that tells us that the community is accepting and that is precious, that’s very precious. It also gives us some credibility having gone through a screening process etc. So all of us in palliative care are very, very pleased about that.

What is your vision for the future of palliative care in India?

Something that really pains me a lot is the discrimination in the name of a diagnosis. We always talk about not discriminating the name of caste, creed, sex etc. but you have to here in palliative care by having cancer. In major cities it is very sad that somebody with a vascular occlusion has to go through an agonising life for a year and a half without getting any little pain relief. That is so unfair and unjust. Unfortunately as it grows it is cancer palliative care that is growing. That’s great if it’s a cancer hospital, I accept, but if it’s a non-cancer institution that kind of discrimination seems very painful to me.

In Kerala, by and large, palliative care is for any health related suffering even if it is somebody suffering from agonising pain from a crush injury of the chest. We don’t say, ‘Look, this is not chronic enough. Come back after three months then we’ll treat you,’ we look after that. Like that is one aspect. I am so glad that cancer was the one factor that brought palliative care into the country to start with but I think it’s time to change. This is something that has to happen. The environment of the community that made a lot of difference to Kerala somehow we must transplant it elsewhere. It will need adaptation, I am sure, there are cultural and educational differences but there are good people everywhere. Have you ever seen a community where there are not some good people? There are there people in every community who are looking for some meaning to their lives; it’s a matter of facilitating their input and the health system opening the door when they come and knock.

So I believe palliative care should be embracing of all health related suffering. I also believe that it cannot be something that stays closed, the duty or privilege of healthcare professionals, that the community has to get involved.