My learnings from Palliative Care – a series: Don’t just talk

Pouruchisti Wadia is Associate Program Director, Romila Palliative Care at SNEHA

Originating in volunteer efforts for social betterment in the late 19th century in Europe and North America, Social Work became an occupation in the early 20th century and achieved professional status by the 1920s. When I chose to study Social Work more than 30 years ago we were told that as professionals our role was to teach people how to help themselves and that the charity approach was old school. With that background and an experience of working on women and human rights, I had deeply internalized the belief that we had to go beyond service delivery to empower people to take proactive action themselves and accordingly build their skills and agency to do so. Our experience at SNEHA has also demonstrated the value of working with a participatory approach that focuses on empowering communities, leading to the long term sustainability of interventions’.

Hence, when I moved to work on palliative care with our latest Romila Palliative Care Centre project in 2017, it was a shift for the NGO, as well as for me personally. We focused completely on ensuring that we provided the best possible service to our patients and caregivers in terms of symptom management, nursing care and psychosocial counselling. However, we shied away from providing direct economic support and preferred to rely on a network of NGO’s to fulfil the economic needs of patients and their families. Then again, remember total pain and working on improving the quality of life?

How does one hope to do it if the patient has to worry about their family’s next meal, the children’s education, the means to pay for treatment, regular diagnostic tests, adult diapers? The list goes on. In India, with the treatment cost being so high, financial worries and stress are not restricted to the poor as even the middle-class families suffer, as all their savings get depleted. In the beginning, we even had patients who told us they no longer wanted our services, if we could not help them financially. Some poor caregivers told us, what’s the use of you just talking? You are not helping us in any way. “You are not providing any financial support which is our main worry, so what’s the point of showing empathy.”

With our experience in helping palliative patients and their families, we gradually evolved over the years. We first did our research to find out all the organisations that were available so that we could refer patients appropriately. We soon learnt about the challenges our families face when they go to organisations providing them financial aid. After all, they have to follow their own protocols of checks and balances, get all the paperwork to verify and then disburse only limited amounts as they have to support a certain number of beneficiaries. The caregiver who is busy looking after the patient and struggling to survive cannot keep up with all the necessary running around. We found another option that worked well. Since palliative care is a need that even the well-off encounter, we had a good mix of patients from all income groups. So all we had to do was match the caregivers’ need to donate to other not-so-affording patients. Over the years, we have had even middle-class caregivers, appreciating the palliative care support received by them, going out of their way to donate and help other poor patients. We also slowly became a more robust resource centre for donated air mattresses, diapers, nebulizers etc. Some caregivers would often directly pay the chemist and organise medicines for our poor patients.

I am happy to share that our Centre and I have now come full circle. I understand that providing this type of help is absolutely essential to providing complete pain management. I am comfortable doing that. We have now appointed a social worker, who is an important cog in the multi-disciplinary team of palliative care. Her role is to work on this aspect in a focused manner. In a short time, we have seen the difference. We are working towards putting more systems in place. Even now we have patients who say, we will only register if you give us financial support. We have always understood this, but we are now trying to do something concrete about it.

We are barely five years old. Well established palliative care NGOs like Pallium India and others have tie-ups to ensure that the patient is assured that after he or she dies, their children will continue to receive an education. Children of patients receiving end of life care from the palliative care OPD in Tata Memorial Hospital are supported for three years after the patient is no more. After all, isn’t this what palliative care is all about? A peaceful death knowing that your loved ones will be taken care of. At Romila Palliative Care, we are working on a plan to ensure that we too can make this happen in a more tangible way.