Adding Life to Years

Palliative Care in Rural North India

I was restless. 2007 marked the twenty-fifth year of working for the Emmanuel Hospital Association (EHA). A medical mission organization with twenty hospitals in rural north India. I spent most of those years as a ‘lady doctor’ at two hospitals. I loved interacting with the simple women and their children, unravelling their complex medical issues, often made worse by a long wait getting to a hospital.

For the last three years, I was assigned a more administrative role. I disliked the non-clinical work. But there was a silver lining. I traveled to several EHA hospitals spread over fourteen north Indian states. I could see EHA’s community health work up front. I grasped the details of village life, comprehended the destructive nature of abject poverty and, most distressingly, beheld the cruel reality of disease-induced suffering. Especially those with untreated cancer and HIV infection, hidden in dark corners of tiny huts, distraught by untreated pain. The Delhi slums exposed similar suffering, situated in the shadow of an enormous garbage hill encircled by birds of prey. Children sat astride filthy open drains, floating their scavenged bits of Styrofoam down the murky water, their little hands immersed in grime. 

It devastated me. The neglect, untreated pain, and inevitable emotional damage—it was appalling.  It appalled me from as far back as I could remember. Now I was seeing it raw and unmasked. Before this, I had only seen patients who made it to the hospital, barely conscious of their state. The people I saw now needed the dignity of being seen, heard, valued, and saved from financial ruin. They needed to be involved in the decision-making process and had a desperate need for connection. Compassion is more than awareness and empathy. It is a call to action. What would my response look like? I prayed about it for two years.

At the same time, unbeknownst to me, a Canadian couple prayed that they would connect with an Indian doctor who was passionate about providing palliative care in rural north India. During a chance meeting, Dr Ed Dubland introduced me to the concept. The common understanding was that palliative care meant end-of-life care. I learnt it was about improving the quality of life for anyone with a chronic life-limiting condition. Relieving physical symptoms was important, but so was addressing emotional trauma, social stigma, and existential questions like, “Why me?” This discovery changed the way I looked at suffering.

In his book, “People in Prayer,” Dr John White wrote, “Bible prayers are like windows. It is what you see through them that matters. For they are windows on eternity looking out on the profoundest issues of life and death. Before long, you forget that you are dealing with a prayer, so startled are you by what you see beyond it.” Palliative care became my window. A British physician, Dame Cicely Saunders, founder of the first hospice movement, expressed it well, “You cannot add years to life but you can add life to years.”

EHA, with its focus on the poor and marginalized, was enthusiastic about expanding its reach to encompass an additional need. Strategizing, planning, team building, training, advocacy, and fund raising became my sole responsibility. It was a daunting task. I remembered Dr White’s words, “From time to time I have to tap on the glass pane so that I would not forget what I was doing.” Relying heavily on UK protocols, I trained at established palliative care centres in south India and overseas. Every day I was consumed by a passionate urgency to implement a model at one hospital, which could then be replicated at all EHA hospitals. The Harriet Benson Memorial Hospital, Uttar Pradesh, became the model, the first community based palliative care service in rural north India. Within a few years, palliative care services spread across EHA hospitals and a project in Delhi.

For nine months, my only other team member was Leela, an EHA nurse, with extensive community health experience and persuasive charm. Patient numbers skyrocketed. The team expanded to include more nurses, a driver, an office administrator, and volunteers. The hospital doctors and administrator hospital generously contributed time and talent, especially for obtaining an elusive opioid license for pain management. One year after its inception, I realized my dream of supporting patients, largely through home visits, with hospital admission if needed.

Our first patient was 60-year-old Subhadra. By examining her environment, I was able to prioritize our actions. A woman, motionless, is moaning on a rope bed against a wall of her hut. Her head rests on two rough discarded tyres. There is food placed on the mud floor within arm’s reach. Subhadra’s stick thin body shows evidence of malnutrition, and her inability to reach out for the food.  Her excrement has made a stinking mess of her bed and clothes. Pressure sores cover her, proof of lying still in one position. A large cancer wound on her foot is bound with an old, soiled cloth. Subadhra’s family tell me they leave early in the morning to work all day in a landowner’s fields. No time for a dying old woman. I wonder about her thoughts during long, solitary days. Dreams of better days running the household and caring for her children? Bitterness over her present neglect? A longing for someone to talk to?

Subadhra is silent as we carry her on her bed into the sunny courtyard. Denied the comfort of human touch and communication for so long, her ability to express emotion is lost. We give her a refreshing bath, clean, and dress her wounds. Her bed is washed and re-laid with neat linen. Her head rests on a soft pillow. Over the next few months, Leela trains Subadhra’s teenage granddaughter to give regular painkillers, change the dressings, and to feed her. She persuaded Subadhra’s husband and children to talk to her even if she did not respond. No days were added to Subadhra’s life, but life was added to her days. Incapacitated as she was, she became a whole person again.

We had no trouble finding Mohammed Nishant’s home, his cries of agony leading us to his residence in the tight lanes of Lalitpur town. At his doorstep, trepidation fills my heart, mirrored on the faces of our nurses. The smell of putrid flesh is immediate. A tall man lies on a mat on the cold, hard, floor. His anxious wife sits cross-legged beside him while their four young children huddle together in a corner. We disguise our horror as we see what is left of Mohammed’s face. Large glazed eyes stare above the deepest cancer wound I have seen, exposing jagged teeth on the opposite side of his face. A feeding tube emerges from his nostril, the only thing keeping him alive. “Focus on the most important,” I tell myself, “pain relief first, then everything else.”

Saroj crushed a tablet of morphine, and syringe-fed it down the stomach tube. In half an hour, Mohammed closed his eyes and slept. Nazreen, his wife, reported it was the first time in months. Leela and Saroj meticulously cleaned and dressed his wound, while Nazreen outlined his story to me. Eight months earlier, they led a busy, contented life. Mohammed sold clothes from house to house, using a handcart. He earned well, she said, proudly showing me a washing machine, the first among their neighbours. This shadow of a man was once an energetic and responsible husband and father. Life changed when he was diagnosed with inoperable oral cancer. She pleaded with us to support her, not only for help with Mohammed, but to negotiate with his two brothers. They intended to evict her from the house after Mohammed passed on.

Leela and Saroj taught Nazreen to administer 4-hourly doses of morphine. They visited every morning to help feed him and dress his wound. They held several family meetings and discussed Nazreen and her future, slowly breaking down the barriers set by his brothers. Mohammed spent his last days knowing that he would not live them out in pain. Even after losing a large part of his body, life was added to his days. Nazreen felt loved and supported. Leela and Saroj visited as often as possible, happy to see that Nazreen and her children still occupied the house, and that her elder two children attended school.

Every human impacts the lives of those around them. Our first patients taught us to not to treat an illness but to treat a person. That death is not a disease even if it is a thorn that will not leave. Real death is the loss of purpose, hope, dignity—and indifference. Faced with all those things, they showed us a different and better way.

“You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die.”                            Dame Cicely Saunders