Health researchers argue that factors such as where we are, who we are with, and how we feel play a crucial role in our experience of pain, which therefore has a direct impact on our well-being.
While clinical medicine often ignores these factors, palliative care recognises that pain perception is directly connected to the psychological and social conditions of a person. As a specialised care model, it brings together doctors, psychologists, nurses, physiotherapists, allied health professionals, and caregivers to improve the quality of life of persons going through life-threatening illnesses. Even as palliative care uses medications and medical devices for pain management and physical and psychological therapy, it centres psychosocial assistance through primary caregivers (usually friends, families, and neighbours) as critical to the patient’s well-being.
However, for many people in India, the supportive environments and social conditions necessary for this model of care cannot be assumed. Migration for jobs is a common feature in both urban and rural areas, which means that caregiving responsibilities fall on those left behind. Caring for loved ones becomes an additional responsibility that a person must perform alongside managing day jobs and household chores. Private palliative care options are also often out of reach for low-income families. Alternatives such as nonprofit-run care centres exist, but they have limited capacities and are usually based in urban areas; families that are not located near them need to travel back and forth to balance caregiving and livelihoods.
In 2024, KHPT, a nonprofit that focuses on healthcare, and the Karnataka government launched a pilot initiative to understand the challenges that limit community access to palliative care. From the nonprofit’s perspective, holistic care begins with the understanding that the illness affecting an individual also ripples through the whole household and social network. So, the response can’t be limited to medicine, pain relief, or a hospital visit. It has to address questions such as: Can the family manage caregiving? Is the person isolated? Do they have access to food, income, and social support? Does the person need psychological support?
In practice, this means pooling different strengths across the community:
- Frontline workers or nurses spot clinical needs and make referrals.
- Family and neighbours handle daily emotional and practical support.
- The panchayat mobilises local resources and links the family to other assistance.
- The health system contributes clinical expertise and handles protocols.
While these may not look like ‘health interventions’ in the traditional sense, they address precisely the social and psychological dimensions that influence well-being and are central to palliative care.
As the nonprofit strove to deliver their idea of holistic palliative care to the grassroots, they realised the leading role that panchayats can play in this endeavour.
The role of panchayats in holistic care
Mohan HL, KHPT’s managing trustee and CEO, says, “We partnered with seven gram panchayats to conduct a survey across 7,240 households in Udupi’s Kundapura taluk to study the social determinants of health.”
The panchayat survey aided by KHPT surfaced interesting insights. The findings showed solid waste, migration, and income as issues that worsened social conditions, eventually impacting health. They also learned about people who suffered from cancer and were bedridden. Apart from remedies for their immediate illness, these people needed support for their mental and physical well-being. Subsequently, KHPT took lessons from this survey into building their palliative care model.
Mohan says, “When the priority list was prepared, a major concern raised by the panchayat members was how to actually help the patients in need. The usual solution would be to put up more beds at government hospitals. However, the panchayat highlighted a crucial challenge.”
From conversations between the people and the gram panchayat members it emerged that not many want to go to an institutional set-up. They need support at home.
Uma Mahadevan, additional chief secretary and development commissioner with the Government of Karnataka and former additional chief secretary (Panchayat Raj), agrees. “The solutions have to be contextual. You don’t need to block a bed for a patient who is bedridden but only needs catheter care. What is the point of making someone travel all the way from a remote village for this? They will experience discomfort, which is easily avoidable, and their caregivers will lose a day’s wage for this.”
Gram panchayats are an inextricable element of healthcare outreach.
Instead, she suggests creating a network on the ground with frontline workers, healthcare nonprofits, gram panchayats, and people who can deliver palliative care at home. She adds, “We can have a nurse or a community health worker do home visits. The onus should not be on the patients and caregivers alone.”
According to Mahadevan, gram panchayats are an inextricable element of healthcare outreach in villages and are primed to drive palliative care.
She says, “Article 243G of the Constitution, introduced through the 73rd Constitutional Amendment, provides for the devolution of powers and responsibilities to panchayats so they can function as institutions of self-government. The accompanying 11th Schedule specifically involves health and sanitation, including hospitals, primary health centres, and dispensaries. So, there is a very clear constitutional intent for panchayats to have a role in the broader determinants of health and well-being.”
The important caveat, however, is that the 73rd Amendment does not automatically transfer all these functions to panchayats. Article 243G leaves devolution to individual state legislatures, so the extent varies across states.
When the states carry out the constitutional mandate, they open themselves up to the potential of meaningfully collaborating with gram panchayats on delivering healthcare to the last mile.
Mahadevan further adds, “In Kundapura, the seven gram panchayats were not simply implementing a health programme designed elsewhere. Through the household survey, they helped identify people and households experiencing illness alongside the social and economic circumstances that shaped their ability to cope—migration, income, living conditions, caregiving burdens, and the needs of people who were bedridden.”
She witnessed this first-hand during COVID-19, when panchayats across Karnataka mobilised to cater to the needs of people.
“Since gram panchayats are made up of elected members from the villages, they know their people closely and understand the contextual diversity of their needs,” she says. “While the state government has an education department and a health department that function in their respective domains, panchayat members work convergently and locally on all issues and can closely assess the overlaps between problems. During COVID-19, they went well beyond vaccination and isolation responsibilities and set up community kitchens, distributed sanitary napkins, and even organised entertainment programmes in isolation centres.” They were spontaneously responding to the psychosocial needs of the people, which is a critical part of palliative care models.
Building the capacity of panchayats
The capacities of gram panchayats can be built to support such a response. For panchayats to successfully drive this change, Mohan says, “They need stronger community involvement in platforms like the gram sabhas and better coordination and mutual trust with the government’s health departments and the department of women and child development. They will require robust integrated data to support localised decision-making. Additionally, the panchayats would benefit from stronger panchayat sub-committees (that are usually inclusive and representative of the villages) such as the village health, sanitation, and nutrition committees (VSNCs) for convergent planning and action.”
For its part, KHPT partnered with the Rural Development and Panchayat Raj Department to co-develop expectations with the panchayats. Mohan says, “We support the panchayats by providing them training, toolkits, and technology, and help them in planning and monitoring. We address gaps in community participation within panchayats and actively promote dialogues between panchayat members and the village communities.”
A non-hierarchical but accountable system
In essence, delivering community palliative care through a gram panchayat–led model is about moving the centre of care from the institution to the community and from the individual patient to the wider ecosystem around them. It is not about asking gram panchayats to deliver clinical palliative care. It is about enabling them to become the local platform through which people in need are identified and different forms of support are brought together so that no one is left behind. However, collaborative frameworks are neither easily built nor easily sustained.
For community-focused palliative care to work, it must treat every stakeholder as an equal partner. Mohan says, “Each stakeholder has something the other doesn’t have. Families and close ones can support patients in a way no one else can. Nurses and health workers can make health accessible, along with assessing and reporting to the authorities on the specific needs of individuals who may need a higher level of care or other kinds of support such as financial or psychological assistance. Panchayats can mobilise people on the ground and monitor programmes. The healthcare department has the budget, methodologies, and technical expertise. Nonprofits can help with training caregivers and handholding the panchayat. There’s a need to understand one another’s strengths and work in tandem.”
Panchayats can bring the health system, community, families, and other local services together.
Mahadevan also supports the non-hierarchical approach but adds that even this collective leadership must be a blend of traditional structures and peer-to-peer collaboration.
She says, “The panchayat does not replace the health system. But because it is uniquely positioned to see and act on the social realities around illness, it can bring the health system, community, families, and other local services together around the person. The health system retains the technical and clinical responsibility, while the panchayat can provide the local platform for convergence, mobilisation, planning, and accountability.”
She adds, “The technical training and expertise has to come through the vertically managed health system. Protocols for pain management, catheter management, and visits are standard processes and should be monitored by the health department. But granular insights about individual needs must emerge from the families and community members and should be communicated through the panchayats. The measure of success is not simply whether someone received a medicine or a clinical service, but whether the community was able to come together so that a person could live, and eventually die, with dignity, support, and companionship in their own home and community.”
Additionally, Mahadevan suggests that the panchayats can judiciously draw upon their own funds for the immediate palliative needs of the community.
Mahadevan and Mohan both agree that delivering palliative care to the communities will not be easy because reaching a substantial population requires large-scale collaboration.
In a way, palliative care is an individual’s problem that needs to be given a collective shape. Karnataka is taking a step towards realising this vision.
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Know more
- Learn how the health system can improve palliative care support in villages.
- Read more about the role of panchayats in health governance.
