I work for an organisation by the name of Snehaanchal which is a non-profit organisation in central India; I guess that’s the only one that is there. We have a seventeen bed inpatient department and then we are catering to almost, say, 90-100 homecare patients. So there’s a team that goes out every day taking care of patients in their homes and also an inpatient department of seventeen beds. We are in technical collaboration with an RCC, that’s the regional cancer centre, by the name of Rashtra Sant Tukdoji.

The sad part of palliation is when we get patients from either the Government Medical College, that’s another place where our volunteers are working and we have a social worker who is there, and we get patients from the Government Medical College and the RST. So there’s a misconception of palliation being associated with terminality, a lot of terminality, like maybe just two or three days left of life and then you have so little time to work with those patients to get them to have a good death because the psychological bit needs time to work with them. So if the palliative team could be roped in at the beginning of the diagnosis because most of the patients come to me saying that, ‘We have not been told about so many things and so many modalities that have been or are being given and whether it is the side effects of chemotherapy or whether it is the side effects of radiotherapy.’ So I so much wish that the treating physicians could have a team because, understandable with the bulk of patients that you’re getting, they’re very pressed for time and they cannot afford to give the kind of time that maybe each patient faced with terminality would need.

So the acceptability or maybe the sensitisation of them towards palliation will certainly affect the healthcare in a much bigger way. That really could happen because central India, or rather all of the country I’m sure, is not so much pro-palliative as it should be. So many experiences where you know that you could have done so much more for the patient. Many of my colleagues have often told me, ‘Why are you doing palliation, you could be depressed or you could go into depression or burn out or stuff?’ But then when I think in retrospect at that very point of time when they’re telling me I look at the smiles or imagine the smiles I’ve had on the faces of people has given me a lot of contentment and happiness. There’s a personal gain that I feel that I could do something to touch the lives of those people in a positive way and that really I feel then that there’s so much of this should be… more of this should be happening in more states with more people should get access to this, the care thing which comes in the palliation. A lot of nursing care, symptomatic control, which probably the treating physicians, whatever their reasons are, are not able to do it. Rather the message goes round and palliation comes on then I think that is the need of the hour.

I had a patient who had attempted suicide three or four times because what was unbearable for him to see his face in the mirror. Every time he saw his face in the mirror he just wanted to go and suicide, so the disfigurement and stuff. So then during such times the multidisciplinary team coming into action and helping him cope with those things goes a long way for him and his family and his children and his parents. So it’s the whole family.

What are your hopes for the future of palliative care in central India?

I wish the outreach could be to the maximum, the most it could be. Another thing which I have observed ever since I’ve started working is, also discussions about that have happened in the conference hall also, is the lower socioeconomic strata maybe they don’t have choices or options so they’re left with this and they’re coming to palliation and probably getting the better care. But the upper class, if I may say so, is not availing to these services, which is even essential for them, until the end because they are moneyed they have resources so until the end they are going in for treatments which are not with so much of an outcome and losing the quality that they can infuse into their lives towards the end – the family bonding or the time or the last wishes. The unfinished tasks and all those can be taken care of during those times. So it should be there, available for everybody in the society, the community, if it can be sensitised to this and the fear of death if that could go because that is something which is so unacceptable for people. People just don’t want to accept that there is a thing as death which is such a truth but they’re not so accepting. They just want to go, go, go until…  I am often asked until when. Ultimately you are mortal, you need to die one day. The time can vary, the stipulated time that you can be a sudden death or a young death, understandable, but then, yes, palliation can do a lot to help these kinds of patients deal with it.

Also what I have personally been working towards is once the patient has been diagnosed and, of course, after bereavement it’s also re-establishing the shattered family back into the society in a way where they’re left without anybody providing for their daily needs and stuff. So even trying to organise them in self-help groups so they can fend for themselves, their children. The apathy of those things is way too much and if that also can be taken care along with, that is another thing I personally am wanting and trying to focus on. So the society accepts there are women who are left. The husbands have been providing for, the husband died of cancer so now she has two small children, how does she fend for them? So maybe trying to train her; we give her some vocational training where she can generate some income for herself and live a dignified life in the society.