Around 9 million people die every year in India. The WHO estimates that 4 million of them would benefit from palliative care; less than 1 percent get it.
For many Indians, young and old, terminal cancer doesn’t mean just death. It means a lonely, pain-filled wait. Unable to work, they are often also homeless and poorer than they have ever been in this last stage of their lives.
A pioneer Bangalore hospice called Karunashraya has been one of the first of its kind in India to offer free palliative care to those beyond medical cure.
I first encountered Karunashraya in 2011 and was fascinated by this place where people went to die. My initial instinct was to explore the concept of death and what it means to those facing it imminently. But as I spent time at the Karunashraya hospital and with the Home Care team on their endless rounds across the city, it dawned on me that the story here wasn’t death, it was about squeezing every ounce out of life in the time we have left. It wasn’t about questions about mortality and the life left behind or regrets felt. It was about surmounting our earthly coils. About a kind of comfort that soothes the troubled body and mind. It was about a team that operated in the midst of loss and bereavement with a rare kind of courage and compassion. The kind that allows you to work in this environment for years and decades, not days or months. And thrive. And help your patients thrive to the limits of their spent abilities.
I spent over two years photographing the human pillars of Karunashraya, most operating in obscurity with the kind of dedication that that seeks no reward.
“The concept of palliative care is not understood by many people and one of the biggest impediments is the medical profession itself,” says Dr. Simha. “The [idea prevails] that if the person’s disease overtakes him, it is the doctor’s failure. [The medical fraternity isn’t] doing this purposely, but because of ignorance. Things are changing, but India is such a vast, complex country. I’m confident that in the next 5-10 years, we’ll see [many more] palliative care centers, not only for cancer but also for end-stage kidney and cardiac diseases.”
When you look at death in the face, you realise the luxury of a peaceful end. Palliative care as offered by organizations like Karunashraya serves a seminal purpose: the right to die with dignity. “Our aim at Karunashraya,” says Somasekhara, “is to take patients from darkness to light.”
Faced with death, the terminally ill go through a range of feelings and thoughts: they savour the good memories, express regrets, bemoan the slippage of time, show consideration for children and other loved ones, get angry and frustrated, discover pride and satisfaction, and constantly ponder over the meaning of life, death and the afterlife.