India carries one of the world’s heaviest burdens of chronic illness-associated suffering. According to the World Health Organization (WHO), more than 40 million people worldwide need palliative care each year, but only 14% receive it. For India, estimates suggest that between 7 and 10 million people require such support annually, yet access is available to barely 4%.
Growing burden, limited care
Non-communicable diseases, which now account for more than 60% of deaths in the country, often involve long stretches of pain, disability and psychosocial stress. While the health system has expanded hospital infrastructure, palliative care, essential for pain relief and family support remains largely absent from the community where most patients spend their final months and years.
Over the last decade, India has introduced a National Programme for Palliative Care (2012), included it in the National Health Policy (2017) and even listed it as part of the Ayushman Bharat’s comprehensive primary care packages. The national programme for the prevention and control of non-communicable diseases also recognises it. In theory, these measures should have ensured universal coverage. In practice, services remain overwhelmingly facility-based, meaning that those who are home-bound or bed-bound are left invisible.
“Ideally, everyone should be getting palliative care. But in reality, barely 4% of those in need are covered,” said Parth Sharma, community physician, department of community medicine, Maulana Azad Medical College, New Delh and lead author of a new study on palliative care gaps.
Findings from Delhi’s margins
The study, published in Palliative Care and Social Practice earlier this month, surveyed 43,000 people in Delhi’s urban resettlement colonies. It found that about two in every 1,000 people required home-based palliative care, a prevalence higher than the threshold used to define rare diseases in India. Yet, none of the affected families had ever heard of palliative services, despite the nearest health centre being only 550 metres away on average. The absence of community outreach meant that households fell into debt and distress while remaining outside the health system’s line of sight. One in three families reported being pushed into debt averaging ₹1.8 lakh, with many forced to suspend children’s education or stop celebrating festivals. In one household, the stress of caregiving culminated in a suicide attempt.
The burden of care fell overwhelmingly on women, who formed 84% of the primary caregivers, with an average age of 46 years. Most were untrained, unsupported, and compelled to shoulder responsibility alongside domestic labour. The predominant symptom among patients was pain, underscoring the absence of even basic relief. “Despite a national programme and health policies, families had never even heard of palliative care,” Dr. Sharma explained. “Proximity to a centre does not mean access. Our system is still designed for infrastructure-based care, not community-based support.”
Building care into systems
The study demonstrated that community-based palliative care can be integrated within the country’s existing medical system without massive new investment. The researchers point to the potential of community medicine departments across India’s 780 medical colleges. In the study itself, one peripheral centre of a government medical college covered 50,000 people. If each medical college embedded palliative care into its community medicine training, access could be scaled significantly. “Embedding primary palliative care into community medicine training can improve access without requiring vast new resources,” Dr. Sharma said.
Some states have already moved ahead with dedicated palliative care policies. Kerala, which adopted a State policy in 2008, is often cited globally for its nurse-led, home-based teams supported by local governments and volunteers. Tamil Nadu, Maharashtra, Goa, and Karnataka have also framed State-level policies, improving service delivery and funding. The authors of the Delhi study urge that a similar approach in the capital could be transformative, making it the first State in northern India with a structured policy.
A comparable study by AIIMS in 2022 estimated a need of 1.5 per 1,000 people, aligning with the Delhi findings. Extrapolated, this would mean 60,000 to 80,000 people in Delhi alone require home-based palliative care. Nationally, this translates to millions of households facing pain, debt and isolation without systemic support.
Towards a compassionate system
The WHO calls for palliative care to be integrated into all levels of health care, with a particular focus on primary and community-based services. For India, this would mean training MBBS and nursing graduates in pain management, equipping field-level healthcare professionals such as ASHAs and ANMs to identify and support patients and embedding home-based palliative services within Health and Wellness Centres under Ayushman Bharat.
“This is not only about hospitals,” Dr. Sharma said. “Unless we shift to community-based models, millions of Indians, especially those at the margins will continue to suffer in silence.”
The research, carried out at the government-run Maulana Azad Medical College and funded by the Biotechnology Industry Research Assistance Council (BIRAC), a Central government body, underscores how community medicine departments are already mandated to work directly in the community and can anchor such services.
Published – September 22, 2025 04:00 pm IST
