In February this year, I rode with one of Pallium India’s seven Home Visit teams for a day, and observed as they visited patients and families to administer their unique brand of palliative care. I had accepted an invitation from Dr. M.R. Rajagopal to visit Pallium’s Trivandrum Institute of Palliative Sciences (TIPS) facility in India’s southwestern state of Kerala. “Mukund, you must come and visit us,” he had told me last year, “It will be an eye-opener for you.” It was certainly that, and so much more!
Pallium’s Mission
Pallium India is a charitable trust; a non-governmental organisation based in the coastal city of Trivandrum, about 100 km from the southern tip of India. It was founded in 2003 by Dr. M.R. Rajagopal and his colleagues, with the objective of alleviating the pain and suffering of millions of people across the state of Kerala (and eventually, all of India) – people dealing with serious, long-term health issues, as well as those suffering from acute illness and nearing the end of their lives. Pallium’s mission statement reads: “To catalyse the development of effective pain relief and quality palliative care services and their integration in health care across India through delivery of services, education, building capacities, policy, research, advocacy and information.”
Dr. Rajagopal, widely known as the Father of Palliative Care in India, led Pallium India for the first 20 years. He initially became involved with the development of palliative-care facilities and providing palliative care and pain relief in the 1980s, when he began to see the need for such services as a practicing anesthesiologist and professor at Calicut Medical College in northern Kerala. He started the first Pain and Palliative Care clinic in Calicut, and in 1993 he was one of the co-founders of the Pain and Palliative Care Society (PPCS). The World Health Organization recognised PPCS as a model demonstration project for community-based palliative care in 1995.
Dr. Rajagopal stepped away from actively running Pallium last year, and assumed the role of Chairman Emeritus so that he could focus on efforts to introduce palliative care across India, and drive the integration of palliative care and pain management into the delivery of medical care for seriously-ill patients. I met Mr. Raj Kalady, now the CEO of Pallium India, during my visit to the TIPS facility. “Everything we do at Pallium is based on what we call the D-E-F model,” he told me. “We demonstrate, educate and facilitate. Our experience has shown this to be the viable approach to promote the growth and spread of palliative care across the country.”
TIPS
Pallium’s TIPS Centre has been operating since 2007 with three major goals:
- Operate community-oriented clinical palliative-care services, including the service of local volunteers and home visits.
- Advocate at national, state and local levels for improved access to pain-relief medication.
- Conduct educational programmess in Pain and Palliative Medicine for South Asia.
I spoke with Mr. Manoj Gopalakrishnan, the Executive Director of TIPS about their services. “We provide both in-patient and out-patient clinical palliative care on site,” he said, “but we go beyond that. We collaborate with half-a-dozen area hospitals. We work with volunteer-led pain and palliative societies in town and in the surrounding districts.” TIPS operates a focused physical and medical rehabilitation programme on site, with dedicated physicians and physiotherapists. They run a “Halfway Home” program, which trains wheel-chair-bound patients to navigate and use a simulated wheel-chair accessible home that includes a kitchen, bath and toilet, before being sent home. TIPS also operates a free Telehealth service enabling people anywhere in India to talk to a palliative-care professional through a video or phone connection. This is a great asset for patients in remote locations and those unable to travel due to physical limitations or financial constraints.
This work has received international recognition. TIPS was re-designated by the World Health Organization in 2024 as a WHO Collaborating Centre for training and policy on access to pain relief – a recognition it has maintained since 2007. As their CEO Mr. Kalady had pointed out, Pallium India demonstrates palliative care delivery at TIPS, educates and trains professionals in palliative care nationally through in-person and virtual classrooms, and facilitates establishment of palliative care services across India, including access to opioids for pain management.
Community-centered home visits
Thousands of residents in rural and provincial Kerala are elderly, living alone, bed-bound, or have no means of transport to a healthcare facility. ‘Meet them where they are, when they need us’ is the underlying philosophy of the TIPS Home Visits programme, an important service component designed to address the needs of such individuals.
Central to the programme is collaboration with trained community volunteers. TIPS has divided the region around Trivandrum into 20 zones, and created a “Link Centre” in each zone to serve as the vital conduit into that area. Each Link Centre is operated by trained volunteers who live in the area, and keep track of individuals and families in their community who need palliative care. These volunteers also assist TIPS by working with, and mobilising local government officials and other agencies to find solutions for the socio-economic needs of patients and families. Volunteers help identify the patients to be treated during each visit, and then coordinate visits by the TIPS team to see these patients either in individual homes or in a local school, library or community centre.
Home Visit teams now operate daily, including special evening visits once weekly on Fridays. This schedule ensures that each zone or Link Centre receives a visit at least once a week. A home-visit team typically consists of the driver, a palliative-care physician, a nurse and a social worker. The list of patients to be seen during a visit is developed in collaboration with the Link Centre. A community volunteer meets the TIPS team when they arrive, and assists them through the day’s visits.
On the road in Murukkumpuzha
I set off with one of Pallium India’s Home Visit teams on a bright and warm Saturday morning to Murukkumpuzha, a provincial area about 20 kms north of Trivandrum. The drive from TIPS took around 45 minutes. It was a tight squeeze with me in the car, but the team members adjusted with a smile. While Mr. Abhilash drove, Dr Arjun Devarajan a senior palliative-care physician and Head of Medical Services at Pallium took or made patient-related calls; prescribing a change of medications in one instance, and suggesting some changes to care in another. The palliative-care nurse Mrs. Dinu D V, and social welfare officer Ms. Hridhi Shibu reviewed and discussed patient files. Pleasantries were exchanged intermittently and we chatted about the day. Mrs. Petrishia Paul, the local Link Centre volunteer was waiting for us when we arrived. She hopped in and directed us from one patient’s home to the next, filling in the team with any essential updates for the day.
Palliative Care on the frontlines
At each stop, Dr. Arjun gave me a brief overview and case history of the patient we were about to see, and invited me to observe and ask questions after we left. The patients we visited included:
- An older woman who suffered a head injury with subsequent neurological issues and partial paralysis, following a scooter accident while riding pillion with her daughter-in-law. She was bedridden at home, and was being cared for by the daughter-in-law who was herself recovering from a leg injury. The daughter-in-law was also looking after her school-going child while her husband was abroad on assignment.
- A middle-aged woman with a history of rheumatic cardio disease, stroke and mental illness, who was missing from her shanty home when we arrived. Her husband and two children lived with her and were highly supportive. The woman had a tendency to wander off when unobserved. The husband did not appear alarmed, however, saying this happened on occasion, and that she always returned in a few days.
- A 61-year-old shopkeeper who sustained severe injuries when he fell from a coconut tree nine years ago. Now, following several surgeries and therapy, he is a partial paraplegic who is able to move about slowly with a walker, and deals with severe neuropathy, pain and incontinence. His wife and caregiver, who also helps run their small store was in distress over her husband not following necessary self-care instructions. The couple was also dealing with serious discord within their family, as well as disputes with some members of the community that had severely impacted their business, and financial as well as emotional health.
- A lady of means in her 80s, who was dealing with the frailty of old age and cardiac issues with equanimity and grace. Her daughter and son-in-law lived with her in her spacious home. The son-in-law, a stroke survivor, struggled with diabetes and balance issues. Both received attention from the team during the visit.
- A man in his 70s recovering from a stroke a year ago, with severe pain in the back, right hand and leg, living with his wife in their compact home. Over the course of the year, he had begun to show significant improvement in general mobility, gait, and the use of his hands, leaving them upbeat and positive about his long-term prognosis.
As is the custom in most Indian homes, we left our footwear at the entrance before stepping inside. We spent almost an hour with each visit. The doctor, nurse and social welfare worker were unhurried and calm as they went about their evaluation. They observed, assessed, questioned, consulted with one another. Patients and family members received the team’s full attention, creating a safe space and connection. Communication flowed through conversation, eye contact, gestures, and even silence. Procedures were performed where needed, prescriptions written, supplies provided. Instructions were given. Each provider made notes on his or her mobile phone. Using a health-care app customised for Pallium’s needs, they could pull up the patient’s case files and update records during the visit. The community volunteer took note of follow-up visits. I stayed in the background and observed a smooth, experienced team in action – each member did what was needed, working with and around one another.
“We see our share of cancer patients, and patients near end-of-life,” Dr. Arjun remarked at one point, “however the percentage of patients with illnesses other than cancer, and those dealing with disability and long-term palliative-care needs is quite high. Especially victims of stroke, and patients with various neurological disorders.”
A well-deserved treat
The day’s visits were complete. Our team was invited to a late lunch at the home of Mr. Francis Ernest, the Senior Volunteer and Secretary of the Murukkumpuzha palliative care centre – a lunch prepared by his charming wife. The discussion around the dining table turned to lighter topics, punctuated with laughs and smiles. Recipes were exchanged. The lady of the house gave us a tour of her beautiful garden. Greetings and goodbyes were exchanged and we were on the road again – back to the TIPs facility. Music played on the car radio. A very full day, impactful and consequential. I had witnessed compassionate care and community partnership at its best.
Community Impact
Pallium’s TIPS Home Visits Programme made 8825 car trips in 2023, caring for 1871 unique patients – with several patients receiving multiple repeat visits during the year. Beyond these eye-opening numbers, however is the immeasurable impact. Bringing compassionate and critical care to the doorstep of individuals who would otherwise have no access to it does wonders for the wellbeing and emotional health of not just the patients, but the entire community as well. “Our multidisciplinary Home Visit teams provide holistic care in multifaceted ways,” Dr. Arjun told me after the visits, “we do not stop at exemplary medical management. We facilitate physiotherapy and rehabilitation services, and, as you witnessed with one of the patients we visited today, we also delve into the social challenges that sometimes besiege our patients, and offer support in unconventional ways that extend beyond the boundaries of conventional healthcare settings.”
What struck me the most about the Pallium Team – in addition to their clinical competence – was their compassion, humility, and communication skills – their ability to meet each person where she or he was, regardless of their position or status in life. No one in need is turned away at Pallium. When a patient is in their care, he or she is the most important person in the room. Pallium India steps in when the health-care system is found wanting. They have fine-tuned and operationalised a model of care that sets the standard for the rest to emulate.
Pallium’s community-centered palliative-care model highlights the transformative impact of collaborative care in addressing the diverse needs of palliative-care recipients. It underscores the significance of recognising and addressing the broader spectrum of challenges individuals face, thus enriching their quality of life during their most vulnerable moments. Pallium India has placed “care” squarely at the heart of everything that they do.
About the author
Mukund Acharya is a social entrepreneur, and patient and caregiver advocate who lives and works in the San Francisco Bay Area in the United States. He is also a regular health & wellbeing columnist. He can be reached at sukhaminfo@gmail.com
(all photographs and used with permission from the author)
Uday Kirtikar
An Immensely admirable undertaking!