The study also advocated for vocational rehabilitation and educational support programs to prevent generational poverty.
Published Sep 10, 2025 | 10:48 AM ⚊ Updated Sep 10, 2025 | 11:03 AM
Synopsis: The study showed that women comprised just over half of patients, while nearly 2 in 3 patients lived in rural areas, often within large joint families with a median family size of 9 members. The most common conditions requiring palliative care were cancer (about 1 in 5 patients) and cerebrovascular diseases such as stroke (1 in 5), followed by chronic heart disease (about 1 in 7) and frailty (roughly 1 in 10).
One in three families providing home-based palliative care in Kerala are trapped in debt averaging ₹2 lakh, while more than two-thirds cannot afford medicines and nearly 1 in 10 struggle to buy food, according to a study that exposes the financial reality of a person who fell sick due to serious medical ailment.
The research, published in BMC Palliative Care, analysed data from 964 patients who received palliative care at home from Pallium India, a non-profit organisation based in Trivandrum, between March 2020 and March 2024.
Palliative care is an approach to healthcare that aims to relieve suffering — whether physical, emotional, social, or spiritual — arising from any health condition, not just those that are life-limiting or severe, while improving the overall well-being of patients and their families.
The study reveals that 31.3 percent (nearly 1 in 3) of families found themselves drowning in debt.
The financial impact runs even deeper than the debt statistics suggest. Nearly 7 in 10 families (68.8 percent) were unable to afford medicines for their loved ones, while almost 1 in 10 (9.5 percent) couldn’t even afford food. With a median monthly family income of just $19.1 (approximately ₹1,600), these households face choices between basic survival and medical care.
“Debt was held by 31.3 percent of families, with a median debt of $2389.5 (around ₹2 lakh). Health-related expenses were the most common reason for debt (57.6 percent), followed by housing-related expenses (18.0 percent), and personal/family needs (14.8 percent),” said the authors.
Healthcare expenses drove more than half (57.6 percent) of all debt cases, while nearly 1 in 5 families (18 percent) accumulated debt due to housing costs and about 1 in 7 (14.8 percent) borrowed money for personal and family needs.
“More than two-thirds (68.8 percent) of the beneficiaries were unable to afford medicines, while 9.5 percent were unable to afford food,” said the authors.
The illness’s impact extends far beyond the patient, creating ripple effects throughout the family structure.
“Serious illness does not affect only the patient. It pushes entire families into social and financial vulnerability. Families receiving home-based care often had to make difficult choices between medicines, food, and education,” said Parth Sharma, co-author, a community physician and public health researcher to South First.
“The mean age of the study population was 61.1 years. More than one-fourth (27 percent) of them belonged to the 61–70 age group, followed by the age group of 71–80 years (18 percent),” said the authors.
The study revealed that women comprised just over half (52.9 percent) of patients, while nearly 2 in 3 patients (63 percent) lived in rural areas, often within large joint families with a median family size of 9 members.
The most common conditions requiring palliative care were cancer (21.1 percent or about 1 in 5 patients) and cerebrovascular diseases such as stroke (20.3 percent or 1 in 5), followed by chronic heart disease (13.7 percent or about 1 in 7) and frailty (10.5 percent or roughly 1 in 10).
“Among the beneficiaries suffering from cancer, breast cancer (30.9 percent) was the most prevalent, followed by gastrointestinal cancers (20.1 percent), cancers of female genital organs (13.9 percent), head and neck cancers (13.9 percent), and hematological and lymphatic cancers (10.8 percent),” said the authors, noting that this finding aligns with breast cancer being the leading cause of cancer in Indian women.
The illness’ impact extends far beyond the patient, creating ripple effects throughout the family structure. In 8 percent of households (about 1 in 12 families), a family member lost their job due to caregiving responsibilities.
“8 percent families reported that caregiving affected the breadwinner’s employment in Kerala. Illness and caregiving together are stripping families of both health and livelihoods,” Sharma noted.
Nearly 3 percent of families (roughly 1 in 35) saw children drop out of school or lose educational opportunities due to financial strain.
“Education of children and family members was disrupted. 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,” Sharma emphasised.
Perhaps most notable, “The illness of another family member was neglected due to the illness of the beneficiary in 98.0 percent of families,” meaning virtually all families (98 out of every 100) had to sacrifice the healthcare needs of other family members.
In most families (87.2 percent or nearly 9 out of 10), someone other than the patient served as the breadwinner, while about 1 in 5 families (21.5 percent) lived in rented accommodation, adding housing costs to their financial burden.
While some support mechanisms exist, they fall short of meeting families’ needs. The study found that nearly 2 in 3 beneficiaries (62.6 percent) received pensions, but more than 1 in 3 (37.4 percent) received no pension support whatsoever.
Only about 1 in 9 families (11.1 percent) received food kits, and fewer than 1 in 14 families (7.2 percent) received support from organisations other than Pallium India. Vocational and educational support reached merely 3 percent of families (3 out of every 100).
“Among the beneficiaries for whom information was available, 7.2 percent of families received support from organisations other than the primary organisation (Pallium India), while 11.1 percent of families received support in the form of food kits. Vocational support and educational support were received by 3.0 percent of families,” said the authors.
The researchers noted that while Kerala has “an array of of social assistance programs aimed at supporting a wide range of disadvantaged groups,” the current level of support remains inadequate to address the challenges these families face.
The study situates these findings within India’s broader palliative care landscape, where needs vastly exceed available services.
“The need for palliative care at the community level in India varies from 1.5/1,000 to 43.1/1,000 population. However, only about 4 percent of Indians in need of palliative care and less than 2 percent of patients with metastatic cancer have their palliative care needs met,” said the authors.
This means that out of every 100 Indians who need palliative care, only 4 receive it, while fewer than 2 out of every 100 metastatic cancer patients receive palliative care.
This gap is notable given demographic trends.
“The need for palliative care is only expected to rise due to the rising burden of noncommunicable diseases (NCDs), due to population ageing across societies,” said the authors, indicating that the current crisis may worsen without intervention.
The researchers stressed that “Health conditions necessitating palliative care also result in increased medical expenditure, pushing families into poverty and financial distress,” noting that existing studies consistently show that “most people with terminal illnesses availing of palliative care services cannot afford basic amenities of life like food, water, shelter, and sanitation.”
The authors propose policy interventions requiring inter-ministerial coordination.
“Our study highlights the need for inter-ministerial coordination within the government to deliver comprehensive care to patients requiring palliative care,” said the authors.
Key recommendations include expanding financial security through improved pension schemes and social assistance programs, revising Essential Medicines Lists to include palliative care drugs, and subsidising their availability through Jan Aushadhi Kendras.
The authors also advocate for vocational rehabilitation and educational support programs to prevent generational poverty.
“To protect families from generational poverty, there is a need for the Ministry of Social Justice and Empowerment, the Ministry of Education and the Ministry of Labour and Employment to formulate and implement policies on vocational rehabilitation and educational support programs in families impacted by illnesses resulting in catastrophic health expenditure,” said the authors.
Additionally, they recommend integrating primary healthcare with home-based palliative care.
“Integration of primary health care with HBPC to meet the basic health needs of other family members may be considered by the Ministry of Health and Family Welfare. Such a step can positively influence health and quality of life among family members while reducing healthcare expenses and strengthening financial security,” said the authors.
(Edited by Amit Vasudev)
