Hospice Tour India: a report on palliative care awareness in our country
Dr.A.K.Dam, MD, FCCP, FPM
“Discovering your voice” was the theme chose for the World Hospice & Palliative care day this year…this gave us the inspiration to undertake a Herculean task; to assess the peoples awareness of palliative care & its importance in our society on the basis of random interviews taken from a broad cross section of people from various castes, creeds, socio-economic backgrounds, cultural backgrounds; in short representing the true India. This was not planned as a formal “study” with statistical analysis of data, etc. but rather based on a casual tour involving less traveled parts of India, in fact involving parts of India which even most Indians have not traveled to.
Our desperate pleas of funding for the program fell on deaf ears from all possible sources including large palliative care organizations. In fact we were discouraged from many areas. However my morale was boosted by a small group of well wishers & thus I got the psychological support to undertake the tour. My nominated partner had to drop out at the last moment & my volunteer Mr.Surjit Singh pitched in & agreed to accompany me for the tour. I had to pool in my personal savings for the tour. It was a blessing in disguise when our local Maruti Suzuki dealer, Mr.Gopal Lodha, agreed to sponsor the vehicle, a Maruti A-Star. The cost of the fuel was however borne by us. Being financially constrained, we could not afford a driver & so I decided to drive. Also, our original plan to cover most parts of India had to be pruned due to lack of funding & so we decided to travel to those parts of India where palliative care had yet to lay its footprints. We covered Jharkhand, Orissa, Chattisgarh, Maharashtra, Madhya Pradesh, Uttar Pradesh & Bihar.
We were flagged off at 9.30 am on 9 Oct.2009.
The first lap began from Bokaro to Ranchi traveling through a less traveled road. From Ranchi we proceeded to Gumla where we stopped for lunch & chatted with truck drivers explaining the concept of palliative care & distributing leaflets on palliative care.
From thereon, the road conditions progressively worsened as the roads meandered through hilly terrain & forests. At most places it was not possible to drive at more than 25 kmph .
At around 7 pm after 8 hours of teeth rattling drive we reached the sleepy town of Pathalgaon where we stayed at a local Gurudwara (cost control strategy). We interviewed the priest (Gyanii ji) & got his feed back on palliative care. We then interviewed a dhaba owner. People had no concept of palliative care but were very enthusiastic to have it as a part of the health care system. They also voiced their agreement on the importance of community participation.
We then drove on taking small tracks passing through villages to reach Raigarh (there is a Steel plant there-Jindal steel) & then onto Raipur, the capital of Chattisgarh. The lesser that we speak of the road conditions on that stretch, the better it is. We crossed Bhilai, Durg and decided to halt at Rajnandgaon. We got a cheap motel at Rs.350 per night. We interacted with a few people there & distributed pamphlets.
The A-Star gave us great mileage & comfort. In spite of the poor road conditions, we averaged around 20 km to a liter of petrol with the A.C. running for most of the day. The large tyres gave us an added advantage in negotiating the ruts & craters on the roads.
The next day we traveled to Nagpur passing through a reserve forest. The road in this stretch was pretty good & we managed an average speed of 60 kmph. At Nagpur we put up at one of my friend’s place. We visited the local Maruti workshop for a free check-up & proceeded to visit a local hospice called Snehaanchal. What amazed us was its fantastic infrastructure. We later got to learn that it was built on the lines of Karunashreya at Bangalore. We were greeted by Sister Mary who showed us around. There were 17 beds & all of them were occupied! They also had a waiting list! But alas, they did not have a qualified palliative care specialist to guide them. I felt helpless! After saying our goodbyes & some suggestions, we climbed back into our car. But then just before I would start it, providence struck as I felt an overwhelming desire to stay back & help them out. I got out & went back to an amazed sister & told her that we were willing to stay back for a couple of days to help the hospice if it was OK with her. The look of delight in her eyes were answer enough & I suspect that she would have clapped her hands in glee if she could do it. However she said that she would have to contact the Managing trustee, Mr.Jimmy Rana. She got back to us by late evening & said that we could come the next morning. We learnt that Mr.Rana is an industrialist & was held in awe. The next morning we were greeted by a gentle & very unassuming person who introduced himself as Mr.Rana. He was accompanied by a charming lady, Dinnaz, who was his wife. Jimmy & Dinnaz are excellent examples of a successful business house who have also striven to help mankind in its most pure manner. They form an ideal couple with a common goal to help mankind. They have been running the hospice since 3 years. Jimmy has visited almost all hospices in India which speaks of his zeal to advance palliative care. What is most important that being a non-medical person, he still realized the importance of palliative care & struggled hard to establish Snehaanchal.
I wish that I could be like them…..
During the two days that we spent at Snehaanchal I conducted lectures on symptom control, conducted ward rounds, tapped a malignant ascites, learnt how to be humble from Jimmy & to be cheerful & enthusiastic from the staff. Dinnaz would quietly slip away for a few moments during our discussions to oversee lunch preparations – how much more considerate & caring could a person be! I strongly recommended that they start their network of volunteers & Mr.Devnath, my schoolmate, pitched in to help.
We parted with a heavy heart after 2 very fruitful days at Snehaanchal & I choose to think that the Grand Master somewhere out there had planned it all in advance….
We drove the next day for Bhopal. The road took us through ghats & hills. It was a picturesque drive.
We also took a small detour through hilly terrain to reach a lake situated on the hill. We stopped for the night at a hotel which was expensive at Rs.1000 per night. We met Mr.U.K.Singh, the propretier, & talked about palliative care. He was very enthusiastic about it.
The next morning our journey took us through forests & hilly terrain, including the Panna Tiger reserve & we reached the sleepy hamlet of Satna. We visited the local Maruti workshop. We stayed at a motel & the next morning took a less traveled road to Chitrakoot. This area is not taken by many as it is infested with dacoits. But the scenic beauty is worth the risk. There was some big mela going on at Chitrakoot & we saw hundreds of villagers thronging to the area. Most of them were carrying small bundles on their heads containing their personal belongings & some were carrying their little children on their shoulders. We even saw the old & infirmed walking by. An excellent example of the importance of spirituality in our culture.
In India, in all religions, particularly in Hinduism, spirituality place a major role in our outlook at health & disease. But then unfortunately, poverty, illiteracy & brief beliefs modify the spirituality in a major way so that the whole framework becomes askew.
We proceeded on to the holy city of Allahabad which is the sangam of 3 rivers, Ganga, Yamuna & Saraswati. We met an Anesthetist, Dr.Roopam Sinha & his wife Dr.Smita, with whom we discussed about palliative care. They too were not exactly sure about the concept of palliative care initially. But they did promise to take up the initiative in their city. From Allahabad we started off after a 2 hour halt & then bypassing Varanasi we stopped overnight on the highway near Gaya from where we started the next morning to reach Bokaro Steel City.
In all, we traveled 3000 km traveling through areas of India which is less known to the intrepid traveler. We could observe the diversity of landscapes, people, religions, cultural backgrounds & ways of life. It became immediately clear that no uniform policy of health care including palliative care could fit in. What would work in a particular community would perhaps be worthless in another. Each state needs its own local initiatives that are best blended to suit the local conditions. Lack of availability of morphine REMAINS A PROBLEM & WILL CONTINUE TO DO SO FOR SOMETIME…. Let us all wake up to the fact. But then good palliative care can still be provided without morphine using locally available resources (e.g. the “Kosish cocktail”). It seems useless to talk about quality & standards when the basic service does not exist in most parts of the country. But then drops of water make an ocean & we definitely shall strive forwards towards perfection soon.