NEW DELHI: Serious illnesses like cancer and neurological disorders not only affect the patient, but push the entire families into social and financial vulnerability, said two studies that focused on India’s home-based palliative care and its consequences on families in Kerala and Delhi, two states which are considered to provide better healthcare.
The two studies also found that families providing home-care palliative care often have to make difficult choices between medicines, food and education.
What is shocking is that in the two states, around one in three families were in debt due to illness, making healthcare-related debt a national challenge.
Speaking with this paper, Dr Parth Sharma, the author of the two studies, said illness and caregiving together are stripping families of both health and livelihoods.
"Palliative care is not a luxury. It is a lifeline that can prevent families from spiralling into cycles of debt and suffering,” said Dr Sharma, who is a public health and palliative care researcher at Association for Socially Applicable Research (ASAR), a non-profit company that works towards research, awareness and action on social issues.
As non-communicable diseases are a growing public health concern in India, he said the government should expand home-based palliative care through the National Program for Palliative Care.
“With consistent effort, political will, and research that generates evidence from the ground, India can create region-specific models that reduce preventable suffering and move us closer to comprehensive, equitable palliative care,” said Dr Sharma.
The study found that in Delhi, where they surveyed 43,000 people, making it the largest in India and even in Asia, two out of every thousand people need home-based palliative care.
“Delhi urgently needs a palliative care policy. We now have a rough estimate that 50,000 to 75,000 people require home-based care in Delhi. A government-funded policy can effectively cater to the needs of this population,” he said.
In the national capital, families are spending 59 per cent of their per capita income on healthcare, while one in three families are pushed into debt, with an average debt of 1.8 lakh rupees.
Women are the worst-affected as the burden of care falls on them.
More than 84 per cent of caregivers were women, most in their mid-forties, balancing care with household responsibilities.
A comparison between the two states found stark differences in the disease burden, social security net, and access to affordable medicines.
In Kerala, the most common conditions requiring palliative care were cancer, affecting about one in five patients (21.1 per cent). It is followed by cerebrovascular diseases such as stroke, which affects one in five (20.3 per cent).
Chronic heart disease accounted for roughly one in seven patients (13.7 per cent), while frailty was seen in around one in ten (10.5 per cent).
In contrast, in Delhi, neurological disorders were the most common cause of chronic illness, accounting for 67.8% of all cases among the participants, followed by orthopaedic conditions (8.9%) and old-age-related weakness with marked dependence (7.8%).
Among neurological disorders, stroke with deficit was the most common cause of disability among 32.22% of the participants. Chronic NCDs like hypertension and diabetes were present among 44.44% and 18.89% of the participants, respectively.
In both Kerala and Delhi, families reported difficulty affording medicines.
But when it came to food, the crisis was much sharper in Delhi, where more than half of families struggled, nearly six times higher than in Kerala.
Coverage under social security schemes was better in Kerala, offering some safety net for patients.
In Delhi, 50 per cent of patients had no pension support compared to 37 per cent in Kerala.
In Delhi, 31 per cent of families reported that caregiving affected the breadwinner’s employment, compared to eight per cent in Kerala.
Education of children and family members was disrupted in 14 per cent of Delhi households and three per cent in Kerala.
“This shows how illness has a generational impact. There is a need for targeted provisions to ensure that children in families affected by life-limiting illness can complete their education,” Dr Sharma added.
He said they chose the two states because of the comparison they present in healthcare services.
Kerala is world-renowned for its palliative care program since the launch of its state palliative care policy in 2008. It has prioritised home and community-based care for decades – making it an ideal benchmark for comparison within India.
“Delhi, as the national capital and a key representative of northern India, has the potential to set standards for community-based care in urban areas. Models developed here could be more easily replicated across other northern regions with similar socio-cultural contexts,” he said, adding that the comparisons help them to not only identify gaps in care but also to draw inspiration from a successful model within the country.
“At the same time, it is important to recognise that even Kerala’s system is not perfect. Despite progressive policies, gaps remain. This reminds us that building strong palliative care models is an ongoing process,” he said.
He said the government should cover outpatient medicines under its insurance scheme, ensure access to essential pain medication, involve the 780 medical colleges in providing primary palliative care at the community level through community medicine departments, and train caregivers, ASHAs, and medical officers to deliver compassionate home care.