IAPCON 2016

Limiting factors for palliative care in India

Dr Abhijit Dam - KOSHISH Hospice, Bokaro, India

Palliative care is something which you can almost call it a luxury, quote-unquote, in India because before starting off with palliative care services in India I had organised something which I called Hospice Tours India in which I and a friend of mine we drove through seven states of India taking the less travelled paths through villages and metalled roads to assess the palliative care needs of the population. But sadly what we actually found was that poverty is the main limiting factor in India; actually death of a family member would actually mean a mouth less to feed. So economics are very much simplified. Quality of life takes a back hand and poverty comes in first. So while addressing palliative care needs definitely it’s important but then poverty is the number one problem, we’ve got to tackle poverty as well.

Working in such populations where poverty rules the roost out there we have to be pretty much sensitive about the cultural, the social factors while delivering palliative care. We have problems of accessibility, acceptability because many things would not be socially or culturally acceptable perhaps or they would have preferences in acceptability and then there are accessibility and the continuity of care is going to be very important. Like I was discussing in my talk, just last week we had been to a particular place of which is called the Khandala Hills and we did take photographs there and those, I believe, are the first photographs ever to be shown actually in any conference for that matter. Because one week before we went there a government vehicle was blown up on the hills out there because the local Maoist groups they rule the roost out there. So before we actually went to the village we had a local contact person who contacted the particular leader of that village and then we were given the permission to go into the village, a very deep-seated village where malaria is rife in every household. We did focus on the care of the community mainly the elderly, we just focussed on the elderly and the very young children also came up to the camp; we had our camp on the roadside.

So palliative care in India would mean something much more; it would not just be the classical palliative care which we give for cancer patients, for patients with cancer. Palliative care in India would be more widespread and one of the greatest chances of palliative care in India would be taken up by the elderly because, as I said, their poverty is the main limiting factor. Once you are no longer useful in the household people would consider you as an extra baggage. So we have to be, as I said, very practical about the needs of the community. So the elderly who have retired, who no longer are physically fit to do any further work in the house or in the fields, they are just left to… they have the backstage. I’m not saying that the elderly are not cared for; the elderly definitely are cared for but then if they had a choice, if there was just one piece of bread in the family the younger one would preferably have it rather than the elderly.

So these are the current scenarios in which we have to make the best of whatever we have. Using local resources, again, is important like using banana leaves for dressings or using turmeric paste, using boiled neem leaves for vaginal douches in cervical cancers. These things are of more importance. Morphine is not available. If you go deep down into the interiors, why only interiors even if you talk of B class cities or C class cities, morphine is not available. So you’ve got to make best with what is available with you. So we have to think out of the box while delivering palliative care in India. So these are some of the issues which I did discuss in my talk and we are still facing those challenges and we take it on a day to day basis. We don’t have beautiful plans for the future because we just live for today. Planning for tomorrow is good but it’s not necessary that whatever you plan for tomorrow would take shape because even the government missionary is… the political scenario in India is not very stable, you see, the governments keep changing very frequently. So once a new government comes in they have a new policy in place. As you can understand, palliative care, there’s no current government policy, national policy is still not there for obvious reasons. There are other factors which take more importance out there. As I practically saw during my tour, the poverty is a big factor.