Hari Adivarekar - Where would you go if you were dying?

This is a project I worked on for over 2 years. Given its sensitive nature and the fact that every person I would photograph would most probably be deceased by the time of publishing I had to take a carefully considered responsibility for each and every image that I made. What does this mean? After getting explicit permission from Karunashraya (see letter), I also made sure I explained to every patient and their families that I was working on a documentary project and that their photos and interviews would be published in India sooner and abroad later. I also explained once the photos were put online I wouldn't have full control over where and how they would travel, although I would make sure they were never misused or misrepresented. I took time to spell out why I was doing this project and that I believed in the work being done by Karunashraya.

I then gave them a choice that given all this information, would they choose to be photographed or decline. Although I had worked closely with the home care team and they had a very profound influence on the patients who were full of gratitude for their service, I never exploited that relationship. I was very clear that no patient or family member should be coaxed or cajoled if they said no. So it was always left alone the moment we heard a no. I wouldn't even take out my camera until they said they were comfortable being photographed. And then be sensitive to their situation while making the photograph, always to illuminate, never to show indignity.

In the three years around 40% of the patients refused to have their photo taken, most of those who said yes, asked that their names be changed or left out, a couple asked that their faces not be shown. I respected every request. I listened to every single one and tried to understand who they were before lifting my camera up to my eyes. And I made sure I connected with each of them, human to human. All who were able were shown the photos and the others were shown to immediate family members to make sure they were ok with the visualisation.

Why am I telling you all this? Because it is important for all of us to realise the power dynamic and privileges at play when working on a project like this. And then use that awareness to act more responsibly, with care and honesty.

I would like to thank the whole team at Karunashraya, most of whom you will meet in the essay and every patient who consented with full knowledge to my making photos of them.
In 2015 the Mumbai Press Club awarded this essay with the Big Picture Award during their annual Red Ink awards for Journalism. I dedicate this and any accolade arising from this project to all the all the people who have kindly allowed me to put them in it.

Kumar used to drive tempos and mini-buses in Bangalore. He was 33 in 2012 when he discovered he had lung cancer. Six months later, he was dying. On a December morning, his family was summoned to meet him. They stand by his bed as his favourite aunt clasps his hand tightly.

One person by his bedside that day was not a family member. Somashekara Chari encouraged the family to take Kumar to Karunashraya, the pioneer Bangalore hospice that offers free palliative care for advanced-stage cancer patients who are beyond medical cure. Somasekhara might notionally be just the designated auto driver for Karunashraya, but he has been visiting the dying for almost two decades as an emissary from the hospice. He has also become an unofficial Karunashraya homecare manager in the last few years. That day, Somashekara cajoled Kumar into drinking a few sips of coconut water while cradling his head.

An hour after he left he was still on the road when Somashekara learnt of Kumar’s death. Most of Karunashraya’s patients live in destitute poverty and close to the border of death.

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 Karunashraya homecare team visits 50 patients per week. Somashekara drives nurses in one of the two distinctive blue auto rickshaws.

The team drives to all corners of the city, no matter how remote or inaccessible, helping the poorest of the poor find peace and dignity before a painful death.

Karunashraya has offered free home care services for terminal cancer patients since 1995. It established an in-patient service in 1999 at its 50-bed hospice in Marathahalli, Bangalore. The hospice operates solely on cash and in-kind donations, which sometimes attracts strange items. Donors range from companies like the Tata Group and GlaxoSmithKline to concerned individuals.

Dr. Nagesh Simha is the Medical Director at Karunashraya and President of the Indian Association for Palliative Care. He is a motivational speaker constantly in motion, offering anecdotes, humour and serious insight to everyone around him. Here, he leads and instructs a team on daily rounds. In a threateningly morbid environment, the dedicated medical team operates with warmth and vibrancy to every patient, no matter how temperamental or angry or depressed.“The current state of palliative care in India is not very good and the facilities still have a long way to go,” says Dr.Simha. “There are some states where palliative care is very active. The best, of course is Kerala, which is doing a phenomenal job and involving the government, panchayats, the police, volunteers, medical institutions and students.”

“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.”

Karunashraya also provides patients with images of Gods of all religions (but only if they ask for them). The emphasis here is on providing palliative care, which is a holistic approach that involves medical, psychological and even spiritual support to ensure a peaceful and dignified death for patients.

The kitchen staff maintains a diary of the patients’ dietary requests and takes these very seriously, since they never know if a certain meal is a patient’s last one. Having cooked thousands of last meals, from puris to fish curry, no request is too big or trivial to conjure up in this kitchen. The kitchen is headed by Kurshid (r), who has served here for over a decade. With a watchful eye and a gleeful grin she puts tremendous love into her cooking.

Patients have access to experienced counselors like Renuka, who strive to put bewildered and fearful minds at ease. There are group and individual counseling sessions with family members and caregivers, many of whom are illiterate and harbor common misconceptions like cancer being contagious.

Laundry might seem minor in the larger scheme of things, but Rosemary (45) in the housekeeping team has tackled the vast quantities for 11 years now. Providing clean bedding and clothing is an essential part of palliative care and it’s woman power that keeps the never ending laundry cycles moving.

Christian nuns come in pairs to spend two years or more at Karunashraya. Sisters Rani and Vimala, both in their 20s take care of everything from managing the nursing staff, labouring over paperwork, ensuring patient medication is perfect

They have even set up a chapel where they hold prayer meetings once a week. They say their religious practice helps them cope with this difficult work.

Home care nurse Pushpalatha treats a 27-year-old who was in the last stages of mouth cancer caused by chewing gutka. The nurses check vitals, change dressings and ensure correct medication is provided between visits.

Pushpamma (76) lived completely alone and had no family to help her during her last days. She depended on a nearby temple and the kindness of her neighbours for some food and shelter. The home care was the only medical aid that she received during this time.

Shazia Begum, 65, in the last stages of cancer and bedridden. With the help of the Homecare team, she showed great courage to recover enough to lead a normal, self-sufficient life.

Accessing morphine for pain relief is one of the biggest challenges for institutes offering palliative care in India. A homecare nurse labels a bottle of oral morphine solution to prevent accidental use.

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.”

After a careful observation, Somashekara decides what is to be done. He has physically lifted people who could not move, cracked jokes for gloomy patients and their families, scolded those who were giving up on life, given practical advice, and cleaned up after people who vomited or soiled themselves. He has personally helped over 2,000 people in their most desperate hours. Almost everytime, he leaves patients with a laugh and good cheer.