“I couldn’t go for my six-monthly check-ups at the government district hospital as I didn’t have the money for the autorickshaw. The travel alone costs around ₹1,200. My monthly income is only ₹1,600 through my disability pension. How can you expect me to go to the hospital? Where will the money for my routine expenditure come from?” asked Shankar (name changed), a 55-year-old man from Kerala who had been homebound for the past two years due to a stroke.
Like Shankar, many Indians are either a hospital bill away from poverty or too poor to access healthcare. It is estimated that nearly 5.5 crore people fall below the poverty line every year due to out-of-pocket healthcare expenditure. Out of these, 3.8 crore people become poor only because of the expenditure on medicines. “India is becoming the epicentre for non-communicable diseases and several of the patients with these diseases, like cancer, cardiac disease, renal failure or stroke, will eventually reach an incurable stage,” says Padma Shri and 2023 Magsaysay Award recipient Dr. Ravi Kannan.
The rising cost of health
Non-communicable diseases will push more and more people into poverty as they require lifelong treatment and periodic health check-ups. However, the financial implications for a family associated with the continuous treatment of these diseases often go unnoticed in our health system. This often leads to ‘financial toxicity’ wherein there is a risk of bankruptcy, decreased treatment satisfaction, foregoing or delays in seeking further medical care, poor quality of life, and poor survival.
With only 1.35% of the gross domestic product (GDP) being spent on government health services, patients bear most of the health expenses. Even in government hospitals where treatment is supposed to be free, the cost of travel, purchasing medicines that many a time are out of stock in government pharmacies, and loss of wages due to the absence from work contribute to the financial toxicity.
A recent study by Dr. Prinja and his colleagues from India reported that an average of ₹8,035 is spent by a cancer patient per outpatient visit and ₹39,085 per hospitalisation in a tertiary care hospital in India. Similarly, the cost per outpatient clinic visit in a tertiary care hospital is ₹4,381 for a patient with diabetes and ₹1,427 for a patient with hypertension. Towards the end of life, attempts to continue treatment with the aim of prolonging life leads to even more financial burdens. Often caregivers have to sell assets and stop the education of children in the family to cope with the financial burden. The same study also reported that in patients with last-stage cancer, more than 65% faced impoverishment due to healthcare expenditure.
The importance of palliative care
Palliative care is a branch of medicine that looks at improving the quality of life of those having life-limiting illnesses like cancers, end-stage kidney disease, debilitating brain disorders, complications of diabetes, and heart disease among others. It is different from other medical specialities as it focuses on alleviating uncontrolled symptoms of the incurable illnesses mentioned above, and preventing non-beneficial investigations, and treatments. It takes into consideration not just the physical dimension of health but also actively looks at the social and economic realities of the patient and the family.
Early initiation of palliative care in patients with advanced disease has shown to reduce health expenditure by up to 25%. Palliative care is provided through outpatient visits, inpatient visits, and home-based care. Home-based care further reduces the cost of seeking care as home-bound patients no longer have to travel to seek healthcare. Vocational rehabilitation and social reintegration are crucial elements of palliative care which further help the affected family and the patient by providing them with the opportunities to earn a living and live independently with dignity. “Depending on their ability to work, we provide rehabilitation support to patients. We either teach them basic skills like stitching or introduce them to small-scale animal husbandry so they can have a source of income,” told John, a social officer at Pallium India.
Lack of investment in palliative care
Despite existing for nearly four decades, awareness regarding palliative care in India, both among healthcare workers and the general public is low. Also, currently, palliative care is not covered under most insurance schemes in India. These two factors have resulted in poor demand and poor access to palliative care in the country. Unplanned and abysmal funding has also been a barrier to public health centres providing palliative care services.
The provision of such care from primary and secondary health centres is still a distant reality despite its inclusion in the ambitious Ayushman Bharat program. Furthermore, as palliative care is not a wealth-generating speciality but an expense-saving one, the increasingly privatised Indian health system has by and large chosen to neglect the speciality barring a few exceptions. The unavailability of such care services in the public and private setup has thus resulted in palliative care needs of the country being predominantly met by private non-profit organisations.
Incorporating palliative care into the Indian healthcare system
The funding mechanism of the National Program for Palliative Care needs to be reorganised, according to Padma Shri Dr. M.R. Rajagopal. “Instead of its current mode of occasional annual budgeting, the program must be consistently funded. Under the current mode, the state government is not sure whether the money will continue to be available in the subsequent year. This prevents long-term planning,” said Dr. Rajagopal.
Considering that palliative care is known to save money for both patients and the provider, its provision in public health centres would help the government not only in saving money but also in protecting people from avoidable health expenditures. “Investing in palliative care is extremely wise as the returns in terms of human health and well-being are enormous,” said Dr. Kannan who feels that it is the mark of a civilised society to make sure that patients with end-stage diseases are supported till the end of their lives.
According to both Dr. Kannan and Dr. Rajagopal, palliative care provisions will help in generating goodwill for corporate hospitals. “The family of the patient who has been taken care of at the end of their life will remain eternally grateful to the caregivers. They will bring back many more patients to be cared for at that health centre,” said Dr. Kannan. The inclusion of palliative care will also improve the utilisation of beds in the hospital. “As opposed to the bed being occupied for a long duration by a patient with poor disease outcomes, the bed could be used to save the lives of people with better disease outcomes. This would increase the turnover rate of admissions in ICUs and thus ultimately help corporate hospitals in generating wealth. This is a win-win situation where the patient has a better quality of life, families face lesser financial toxicity and the ICU bed generates more wealth by being utilised by more people who truly need it,” said Dr. Rajagopal.
It is the moral obligation of the health system to take care of people, especially when they are suffering from life-long and life-limiting illnesses. It’s high time public and private healthcare providers realised the high returns of investing in palliative care and prioritised it.
Parth Sharma is a public health physician, a researcher at the Association for Socially Applicable Research (ASAR), and the founder of Nivarana.org. Deepak Sudhakaran is a community medicine specialist heading the Social Works Division at Pallium India.
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