Human Connection: The Heart of Palliative Care in Rural India
- 3 days ago
- 8 min read
Gaining trust through palliative care.
Palliative care focuses on comfort, dignity, and quality of life for patients with serious or terminal illnesses, rather than curing diseases. In rural northern India, that kind of care is still nearly impossible to find.
It is a pleasant March morning as the Kachhwa Christian Hospital (KCH) palliative care truck bumps along a rural road. The Uttar Pradesh fields are busy with laborers as winter gives way to spring.
We turn off the rutted road to a cluster of houses. The driver gives an apologetic smile as the medical bag jolts into the nursing team as we stop.
The first visit of the morning is a man with late-stage oral cancer. When we arrive at the patient’s home, we find there is little to do medically.
The family had changed his dressing just before the team arrived, the clean, white gauze contrasting with his tan face and the home’s clay walls. Palliative care nurse, Sr Rajani, checks his feeding tube: no clogs or infections. The hospital team has taught the family to diligently maintain the tube while creating their own nutrition formula -- a slurry of diluted rice, lentils, curd, and egg. Seeing the successful wound care and nutrition, the team inquires about general health concerns and spends time talking with the family.
It’s a wildly different outcome than he thought he would have two years ago when he showed up at the hospital. He was in incredible pain with his jawbone visible through a weeping, open oral-cancer tumor. Much of the left side of his face was gone.
Malnutrition left him weak all over and wasting.
Now he is back at home receiving pain management, nasogastric feeds, and caregiver support from medical staff.
Living in the Worst Country to Die
He is in rarified space: someone with access to palliative care in rural northern India.
A 2010 report made headlines around the country when it analyzed that India was the worst country to die in, finding it 40th out of 40 overall and 35th out of 40 for access to end-of-life care.
The World Health Organization estimates that 56.8 million people need palliative care annually.1 Worldwide, only 14 percent receive the palliative care they need, and this number dwindles to 1% in India.2 More startling, in rural northern India, that number drops to a fraction of a percent. (Ninety percent of India’s palliative care centers are in the southern tip of the country.)2
Why One Doctor’s No became Yes
Dr. Ashita Singh oversees the palliative care program for the Emmanuel Hospital Association, the network that administers all of HIT’s partner hospitals.
“When I was first asked whether I was interested in (running the palliative care unit) my answer was no’,” she said. “I thought it was more important to look after people who have a chance at life but who are going to die if we don’t care for them.”
Her hospital wards are filled with tuberculosis, malaria, diarrhea, infectious diseases, and so many treatable conditions. “There was so much work to do with those conditions that I thought I didn’t have the space for the time to be able to accommodate palliative care,” she said.
But then a mentor of hers told her to spend some time in her community and see how people in the villages die.
“When I did that, I mean, there was no way anybody could say no. I just saw the depravity in which people were dying without any care, no access to basic health care let alone palliative care.
“You’re going to people who are already living in marginalized communities, but, as you can imagine, people with palliative care needs are more marginalized even within that marginalized community. They are rejected, shown that they’re not important at all. Invisible.”
When you go after them, it makes a statement for human dignity like no other, she said.
The Mistrust of Misinformation
KCH’s next visit is to a woman with metastatic breast cancer in a neighboring village. Soon after the truck parks, relatives and curious bystanders show up. The patient, suffering from nausea, dizziness, and pain, lies on a cot in a covered breezeway, finding relief from the sun.
The atmosphere soon feels crowded and then hostile. There are complicated layers of distrust for any medical personnel in a community that relies on local healers. A crooked path of information exists where the patient’s husband has withheld his wife’s diagnosis and prognosis from her and most of the family. Community members with social authority insert themselves next to the woman, trying to stand between her and Sr Rajani. More family members press in; neighbors soon appear on their roofs to get a glimpse.
The team is peppered with questions, but still, they stay with her. Sr Rajani answers questions while asking a few of her own to determine how best to navigate the conversation. When the staff gets as much positive interaction as they can, they head to the truck and back onto the rutted road.
This stunted interaction is heartbreaking. I can’t help comparing this visit with the friendly and productive conversation we started the day with. I’m sure my frustration shows on my face. “It’s too bad they’re so antagonistic,” I say as we head back. “How do you keep visiting a patient in a family like that?”
“They all start like this,” Sr Rajani answers off-handedly, as if having to defend her role and competency to a group of curious and disapproving community members happens every day.
Because it does.
KCH’s Community Health and Development Director Dr. George Varghese echoes her, “There is a lot of misunderstanding about disease, both its causes and cures. And there is little framework to understand palliative care medicine and what we can do. We connect patients to government services, order and update medications, manage symptoms and wound care. But we also have to start at the beginning with the same question: ‘Do you understand what is happening to you?’”
We heard this refrain at other HIT partner hospitals we visited. “Our patient population doesn’t understand palliative care medicine,” Landour Christian Hospital Deputy Medical Superintendent Dr. Alem Putulema says. “Dialysis and cardiac stents are more obvious and understood needs. But people don’t know about the relief and dignity palliative care can bring.”
She continues, “Our program is completely accessible to anyone. But it is equally bypassable, so we must do a lot of educating. Each case is different, requiring unique conversations and care.
“Palliative care can be integrated with curative and restorative medicine as part of the continuum of care. And it provides a golden opportunity that few other programs can. It values the patient in any condition and allows for honesty. It can set family members free from lying about a diagnosis. If a relative wants to hide a diagnosis from the patient, we can work one-on-one with both of them. It all starts with communication. Open dialogue can help with the ups and downs of a terminal disease.”
“Palliative care is the need of the hour, especially in a country like India where the number of terminally ill patients has always been a concern, and with projections showing this number to only go up and increase exponentially.”2
How the Program Grew to 13 Hospitals
EHA started its palliative care as a medical program in Lalitpur in 2010. It has grown to 13 hospitals and clinics including all four of HIT’s partner hospitals. This region in rural northern India has one of the highest densities of poverty in the world, and malnutrition continues to be the number one risk factor driving death and disability.5
This palliative care staff have chosen to practice where more than 75 percent of the population is below the poverty line, and malnutrition is so high that an egg a day is a rarely reached protein goal.
Palliative care medicine has evolved over the centuries, but this context is its core mission, that compassionate experts providing medical care and understanding in fragile seasons of life. For these particular patients, it is also advocacy for those with severe human suffering.
What Happened to Her
After our visit, we learned more about the woman with breast cancer in the breezeway. She had been diagnosed with cancer at a larger hospital more than a year before. At that point, the cancer was treatable with a good prognosis for a 5+ year survival rate.
Then came the tragic advice from a community member with high status: she shouldn’t receive cancer treatment or even be told her diagnosis; her daughters would have a hard time getting married if people knew their mother had cancer, and she was considered not emotionally strong enough to handle the information.
In the following months, her cancer metastasized and her pain worsened. More family members slowly learned her diagnosis/prognosis but demanded she remain ignorant. The palliative team continued to delicately give her information and care while building trust with her family.
As it turned out, the team didn’t have much time. The woman died just four weeks after this visit. The team comforted her with their visits and gave her relief through administering morphine– a significant step considering India has only a small percentage of the morphine needed for health-related suffering (Image 4).6
But everyone who crowded the breezeway saw palliative care in action. They witnessed the KCH’s team care for someone who culturally shoved to the side. She received relief from her pain, dignity in her care, and clarity in her confusion. And she served as a catalyst for the next person to understand what palliative care medicine can provide.
Frequently Asked Questions
What is palliative care?
Palliative care is medical care focused on relieving pain and improving quality of life for people with serious or terminal illness. It can be provided alongside curative treatment, not just at the end of life.
Why is palliative care so hard to access in rural India?
Ninety percent of India's palliative care centers are concentrated in the southern tip of the country, leaving rural northern regions with almost no access. Cultural stigma, misinformation about disease, and a shortage of trained staff compound the gap.
How does HIT support palliative care in India?
HIT partners with hospitals to support palliative care teams serving rural communities. You can support this work by donating to HIT’s healthcare program.
References:
1World Heath Organization. “Palliative Care.” https://www.who.int/news-room/fact-sheets/detail/palliative-care. Accessed May 1, 2023.
2Shukla R, Singh N, Acharya S, Shukla S. Hospice care in India: A review. Journal of Family Medicine and Primary Care. 2022;11(9):4987-4990.
3The Economist Intelligence Unit. “The 2015 Quality of Death Index: Ranking Palliative Care Across the World.” https://impact.economist.com/perspectives/sites/default/files/2015%20EIU%20Quality%20of%20Death%20Index%20Oct%2029%20FINAL.pdf. Accessed May 1, 2023.
4Finkelstein EA, Bhadelia A, Goh C, et al. Cross Country Comparison of Expert Assessments of the Quality of Death and Dying 2021. Journal of Pain and Symptom Management. 2022; 63(4):E419-429.
5Institute for Health Metrics and Evaluation. “India”. https://www.healthdata.org/india. Accessed May 1, 2023.
6Knaul FM, Bhadelia A, Rodriguez NM, Arreola-Ornelas H, Zimmermann C. The Lancet Commission on Palliative Care and Pain Relief– findings, recommendations, and future directions. The Lancet Global Health. 2018;6:S5-6.
