Palliative care in India has come a long way; I’ve been with the movement almost since the beginning in 1986 when there were a few isolated centres, more in the south. Now it’s become a medical speciality and there is a lot of other training also going on. There are now centres covering quite a fair amount of states in India, more in the south, less in the north, but there are also champions in the north who are trying to take it forward. So, one, there’s better coverage; two, there’s better education. There is a fair amount of research, both quantitative and qualitative. There is a little advocacy; I think the call to action is to really increase the public awareness and also for palliative care to now move into integrating with other specialities in medicine like HIV, internal medicine, paediatrics, geriatrics, family medicine. That’s what we are going to be concentrating in the next few years.
Is there any change or development in opioid availability in the country?
We are lucky that now the government of India has some budget for palliative care, it’s not a dedicated budget but it’s a flexi-budget and therefore the states can apply to the centre for money to start palliative care in that state. Then through the state government there are funds available to start palliative care. Opioid availability is also one of the key issues which was taken up by the WHA and the government of India has just, in 2014, amended the NDPS Act. That makes it much easier for recognised medical institutions to be able to procure morphine.
Having said that, we are rather slow in implementation of policies which have undergone change. The implementation is going rather slow; there was a meeting six months ago with the Finance Ministry regarding giving another urging to the states that they need to all change the law and move according to the new amendment which actually is easier but that is also taking its time.
How is paediatric palliative care developing in India?
It’s picking up. Partly, I should say, being a member of the International Children’s Palliative Care Network, that there is a very concerted effort by champions all over the world to take children’s palliative care forward. The needs of children who are having life-limiting conditions is very different than what it is for adults - the parents, the grandparents, the siblings. So the need of the person who has the condition is different and there are perceptions now coming, even into the government I would say, that there is a need to have a different set-up for paediatric palliative care.
It’s again moving very slowly but at least in the Indian Association of Palliative Care there are concerted efforts and there is now a growing group of people who are trying to do paediatric palliative care. Also there are little inroads into the Indian Academy of Paediatrics so that we’re trying to create awareness with the paediatricians all over the country for the need for paediatric palliative care.
What is the importance of learning about palliative care for day to day practice?
Our country is basically made up of many small villages, little larger towns and then the big towns. So a child who would be very ill and then passing away with HIV, especially if it was only grandparent care, would necessarily be being looked after in that village or the small town. It makes a lot of sense for the care to be provided for that family where the family resides. So paediatric palliative care principles need to be taught to whichever that person who would be caring for this child, which might be a physician, because we don’t always have paediatricians. So the paediatrician/physician would need to have an understanding of the principles of paediatric palliative care, so would the nurses, so the nurses who are available in the community. What we have in our country which is useful is other healthcare workers, what we call the ASHA workers. They are the ones who actually know everything about the families and the villages and they are always the [??] between the medical professionals, the doctor, nurse, and the family. So in this case, especially if there were no parents and there were just old grandparents the ASHA workers also need to be given perceptions, understanding, on basic paediatric palliative care so that they would be able to take care of this family, especially when there are no parents. There are a lot of not only physical help but social and psychological and spiritual help and that would be provided by the ASHA workers, the local nurses, the local physicians and therefore they all need to be trained in paediatric palliative care basic concepts.
