Published January 13, 2016
A white van coursed through narrow roads along the monsoon-soaked coastline of Kerala, a state in southwestern India. Inside, Radha Upasarna, a volunteer, and two nurses looked over the roster of patients they would visit, most of whom had cancer or heart disease or were paraplegic.
As they bumped along through the area’s villages, the women shared snacks, stopped for roadside chai, and sang film songs in Malayalam, Kerala’s official language. Around midday the van parked outside a whitewashed home where four out of the five members of the family there were chronically or terminally ill. As they did at each home, Upasarna and the nurses quickly got to work: they checked for bedsores, filled prescriptions, delivered kits of lentils and rice, and often just listened to stories.
Bolstered by pillows on a daybed in the living room, Alikoya Karathattya, a snowy-haired 62-year-old was in high spirits, despite recovering from a recent chemotherapy treatment. Karathattya supported the family by driving a motorized rickshaw until he suffered a stroke in 2008; shortly afterward, his bladder cancer was diagnosed. His daughter Semina, a 34-year-old single mother, was receiving chemotherapy for cancer of the cheek, and his wife, Ayshabhi, was trying to control her diabetes, a widespread problem in Kerala.
Upasarna, a tiny woman wrapped in a cotton sari, sat at Karathattya’s bedside, holding his hand and assessing his pain. Working with a nonprofit in the Ernakulum district called Apium, she is one of 15,000 volunteers in Kerala who assist a network of physicians and nurses in extending palliative care to tens of thousands of people who are incurably ill, bedridden or nearing the end of their lives. Upasarna said this work was not only a service to her community, but a way to overcome the loneliness she experienced after her husband died last year.
“It doesn’t feel like work,” she said. “It’s just something I want to do.”
Volunteers like Upasarna are the linchpin in Kerala’s palliative care system — one that was singled out as “a beacon of hope” in The Economist’s “Quality of Death” study in 2010. Kerala’s achievement is especially significant at a time when richer Indian states and wealthy countries like the United States are struggling with the same challenge: How can health systems offer the possibility of a dignified death to everyone?
Most people want to die the same way — pain-free and at home, surrounded by family. But in reality, most people in high-income countries die in a hospital, while in many lower-income countries they suffer in pain without medicine or facilities.
Countries take different approaches to their chronically or terminally ill. In Britain, ranked highest this year in The Economist’s “Quality of Death Index,” the government has invested $703 million on palliative care. In the United States, starting this year under the Affordable Care Act, doctors will be paid for time spent in conversations with patients about end-of-life care. And in Uganda, the health system has invested in nurses, instead of doctors, for pain management and hospice care.
“It’s the universal experience,” said Ellen Goodman, co-founder of The Conversation Project, an organization that guides people to talk about end-of-life decisions and pain management. “When you get this right, you get something big right.”
In Kerala, it has taken a generation to make that conversation, and palliative care, a household norm and a government priority, according to Dr. Anil Paleri, director of the Institute of Palliative Medicine, a medical and training organization in northern Kerala.
“Suffering is the common denominator,” he said. “But this way, the community has a tool in their hands.”
The movement in Kerala gained steam in the 1990s. Inspired by Dr. Lucito Desouza, a cancer surgeon in Mumbai who introduced hospice care to India in 1986, two doctors, M.R. Rajagopal and Suresh Kumar, teamed up with an activist friend, Asoka Kumar, with the goal of spreading knowledge and practices about that kind of care across Kerala, where more than 33 million people live – nearly half of them in urban areas, and the rest in 1,400 villages.
Working through the nonprofit organization they founded, the Pain and Palliative Care Society, and later alongside other nonprofit groups, physicians, village leaders and journalists, they spent years taking their message from house to house. Today, about 100 nurses, 50 doctors and 300 nonprofit groups are involved in palliative care in Kerala, according to the World Health Organization.
Kerala had an advantage: The state has a long history of community organizing and unionism. (One of the world’s earliest democratically elected Communist governments was in Kerala). It also has the highest literacy rate in India. Paleri, who has worked in the movement for almost a quarter-century, said Kerala’s history made it easier to start at the village level and trickle up to the government.
Offering palliative care “had gained momentum as a social movement,” he said. “It was hard for the government not to notice.” By contrast, the state of Maharashtra, where officials began efforts to spread palliative care 20 years ago, has seen much slower progress, according to Dr. Mary Ann Muckaden, who directs the palliative care program at the Tata Memorial Hospital in Mumbai.
Still, it took time for palliative care to become an official part of Kerala’s health system. That happened in 2008, when the state government declared such care a basic right. It allotted 10 percent of the state’s share of national health funding to that kind of care, mandating that each government hospital include a doctor and nurse trained in delivering it, and giving local panchayats, or groups of villages, control over their own programs.
“Kerala’s model is now setting national standards,” said Dr. Kamalakannan Ellangovan, the principal secretary of health for the state government. “We will be strengthening these programs, not only through the elected local bodies, but also some of the well-known NGOs like Pallium India.”
In the early years, however, an important piece to the policy puzzle had not fallen into place. Morphine, an opioid used to manage pain, has been highly restricted in India since 1985. Most states still require a specially trained doctor to distribute the drug — a big obstacle to widespread care, given India’s shortage of doctors.
But Kerala has made the most progress of any Indian state in expanding access to morphine. In 1995, with guidance from the World Health Organization, the state’s lawmakers began allowing palliative care centers to administer the drug orally. In 2008, a new policy went even further: requiring access to morphine where needed for palliative care.
The difference between states is now stark: Lotika Rajuwal, 34, is struggling with acute lymphoblastic leukemia and a harsh regimen of chemotherapy. But she can’t get morphine for the pain because she lives in West Bengal, rather than Kerala. “When I’m in pain, I feel hopeless,” she said. “Especially in the night, the pain is unbearable.”
As the Apium van made its way along the Ernakulum coast in Kerala, Upasarna and the nurses monitored the morphine doses for patients struggling with paraplegia or chemotherapy treatments. Alikoya Karathattya, who has gone through six rounds of chemotherapy, said morphine allowed him to sleep at night.
“I’m not as tense as before,” he said. “I have hope, so I keep moving forward.”
Today, six million people in India need palliative care each year but only a tiny fraction — less than 3 percent — get it.
“The sad part is that despite growing awareness, we have not made much progress in terms of the number of people actually getting palliative care in the last 10 years,” Rajagopal said.
As an example for makers of national policy, however, Kerala’s model has been gaining traction. In 2012, the government of India issued a policy paper urging states to develop palliative care programs, according to Dr. Sudhir Gupta, a director at the Ministry of Health & Family Welfare in New Delhi. And in 2014, the government took steps to amend the 1985 Narcotics Act to expand access to morphine, although most programs are just getting going, Rajagopal said.
Gupta said that only seven of India’s 36 states and union territories had been allocating funds for palliative care so far, but he expects that number to grow. “This is a humble beginning but will certainly pave the way forward,” he said.
In “Being Mortal,” a manifesto on how to take care of patients at the end of life, Dr. Atul Gawande, a physician and journalist, writes: “The only way death is not meaningless is to see yourself as part of something greater: a family, a community, a society. If you don’t, mortality is only a horror.”
For families like the Karathattyas, it is the ability to live together, sharing occasions like the Muslim festivals of Eid with their friends and serving snacks to their neighbors, that make the heavy shadow of illness and death more bearable. Rather than being a moving hospital, the little van that comes to their house every month is a reminder that they’re not suffering alone.
“There’s always pain,” Karathattya said, leaning back on his bed. “But there’s always happiness.”