Author: Dr Abhijit Dam
I have been pioneering the cause of palliative care in rural Jharkhand and adjoining parts of West Bengal since 2005. Working in resource-poor settings prompted me to reflect on both the challenges that rural palliation poses in a country like ours, where palliative care is still a developing speciality and possible solutions to these challenges needed to be unravelled.
‘Kosish’ was born out of a ‘sankalp’: a promise I made, determined to create something which began during my arduous hours while working in a critical care unit (CCU) back in 2000. I watched as patients died lonely, painful and undignified deaths hooked up to life-support, their hands restrained, desperately seeking a familiar face among the masked and foreign faces of health care personnel, while family members waited just 40 feet away, behind walls, out of sight. Here, as the patient’s ‘prana’ (soul) left the sthula sarira (gross body), it left the mortal body steeped in regret..If only things could be different.
That was when my ‘sankalp’ was born, to ensure that death could be dignified and pain free; dignified not only physically but also psycho-socially & spiritually. For death, is the only certain event in our existence. We invest so much time, money and energy in all other transient events in our lives, but little or none in the only event in our existence we can be sure of: a certain death. So, I undertook my ‘sankalp’, investing time, energy and money to try and ensure that the experience of dying could become a more dignified and a meaningful process. I was not born into a rich family and I took out a loan to purchase a plot of land where I saw myself spending my last days. A colleague of mine also put in her savings while my family supported me wholeheartedly throughout. Our Kosish was born.
Kosish- the hospice
I had begun to realise that it was of paramount importance to address the spiritual and existential concerns in the treatment of terminal pain. ‘Making meaning’ became a focus as dying patients tried to make sense of their suffering. The desperate, searching gazes of the dying in the CCU had been my prime motivation in embracing palliative care and I used empathy and compassion as tools to address these issues. Religion and ritualism, cultural traditions that I used to scoff at began to make sense to me and I delved into the study of religion to help my patients in ‘making meaning’. Interacting with the dying I familiarised myself with the art of helping the dying in the process of ‘letting go’, as they embarked on their journey, out of this world.
A Holistic approach:
David Tasma, a patient of Dame Cicely Saunders, once commented, “I want what is in your head and in your heart”! He meant that a dying person does not only seek physical comfort and relief but also, perhaps equally important solace for one’s soul. I imagined myself bedridden, helpless, anxious, and in pain. What I would want in those circumstances? What would be my needs? My answers were: a safe, familiar environment, the preservation of my comfort and dignity, including relief from pain….. I felt that my list was not too demanding and pretty feasible. From a compassionate presence to someone preparing my favourite bowl of soup and serving it in an aesthetically pleasing manner to a relaxing foot massage, I would want it all, in addition to fine nursing skills. I therefore incorporated these central requirements into our training programme for Nursing Aides. They learnt how to lay a table attractively and how to cook a wholesome bowl of soup to infuse warmth into a cold body. We know that we cannot always cure, but comfort, yes, that is something that we can always offer.
Kosish: the birth and it’s journey
What made Kosish unique that it was located in a rural setting with a rivulet running through the centre. In order to better understand the needs of an ‘Indian’, as far as palliative care was concerned, I undertook a long journey to 8 Indian States by car, sleeping in ‘dhabas’, interacting with the ‘common man’. I had no access to funding, and what was planned as a trip all over India, had to be curtailed to just 8 States. Poverty, I grew to realise, was a fundamental concern, overshadowing palliative care. It was then that we started to address poverty as well.
Medical camp organised by Kosish in rural Jharkhand
We started a unique, inclusive programme whereby we encouraged children from surrounding villages to come to our center where they were given ‘value education’ as well as, most importantly, a healthy meal. We focussed primarily on the girls. What started off with 5-8 children rapidly increased to around 70 children and soon we were struggling to feed them ourselves, for we had no access to funding. The almighty smiled down on us and help started to arrive from ‘angels’: our donors.
We have been making home visits to terminally ill cancer patients since 2005 as I believe home-care to be the backbone of true palliative care. We therefore initiated a unique ‘home-care’ programme for the rural elderly in which trained women from local villages conducted door-to-door visits, carrying out basic health and well-being check-ups, supplying vitamins, providing warm blankets in winter as well as providing food for the elderly which included nutritious ‘sattu, gud or chura’ which was readily accepted. Thus, we brought palliative care to grassroots level.
Palliation is all about ‘quality’ rather than ‘quantity’ and I visualised the potential of utilising the skills of local village women which would mean better acceptance by the community. (The local midwife services were unable to take on additional work). I envisaged a programme of ‘home-based care’ for the rural elderly which would address their concerns holistically. Interested women were given a short period of training in our rural Hospice, Kosish, after which they began their door-to-door visits to the rural elderly in each village. We organised health check-up camps for the elderly in remote villages in Jharkhand and adjoining parts of West Bengal, diagnosing & treating causes of mortality and morbidity such as hypertension, osteoarthritis, depression, malnutrition and loneliness. We partnered with the Clothes Box Foundation who supplied us with clothing, which we freely distributed to the elderly and the children. The concerns of the rural elderly were thus being successfully addressed resulting in the programme becoming popular in the villages concerned.
The lack of a steady source of funding sadly forced us to scale down the extent of coverage over time, but the operations are still ongoing nonetheless. It was then that I decided to venture a step further initiating the training of ‘Palliative Nursing Aides’.
Training session at Kosish
A total of 10 students were enrolled in the first training group: 9 village women and one man joined the programme. The course fee was capped at INR 10,000 for a period of 6 months. It was then Madeline Kerkhoff from Kicozo, an organisation specialising in aromatherapy, offered scholarships of 50% to the whole group. The girls asked to live full-time on campus which we were not prepared for. Unfortunately they were unable to afford their keep which meant we were now faced with having to provide 3 meals a day for 10 students. A roughly calculation meant INR 18,000 per student was needed over 6 months. Even after the scholarship they were paying INR 5000 per student for 6 months. With the costs of fuel, maintenance and additional staffing we were likely to be spending INR 1.5 lakhs every 6 months. I started to dig further into my personal savings.
All the enrolled girls were ‘officially’ class XII pass (with one exception), but their actual level of literacy & cognition was poor. It was like teaching 10 year old children. This was the start of a very long journey. I was often driving distances of 55 kms a day for long periods. Throughout this time I continued my work doggedly thanks to the support of my wife and my colleagues in the team.
We realised that the needs of a potential ‘client’ in urban surroundings might be different, so we actually created the ‘Bulbul finishing school for rural women’, where we taught them basic table manners and appropriate and acceptable ways to behave in a modern urban household. In order to promote ‘holistic care’, special emphasis was given to the art of ‘listening’ & other non-pharmacological therapies, of which the Siddha technique of Varmam massage was judiciously used to provide comfort. They were also taught how to prepare simple, nourishing meals for the bedridden, including feeding them patiently. Special emphasis was given to respect and towards the importance of maintaining the dignity of ‘clients’.
Our journey continues…We have now started the second group of trainees with 14 students.
To know more about Kosish, please click here