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The 2015 Quality of Death Index report published by the Economist Intelligence Unit exposed the poor quality of end-of-life care in India. Among the 80 countries studied, India ranked 74th in the affordability of care at the end of life. A 2011 Lancet article on healthcare equity in India showed that 39 million Indians are becoming poorer every year due to rising healthcare costs. Most of these costs are related to aggressive medical interventions at the end of life. According to a 2014 World Bank report, the government spends less than 2% of the GDP on health and 89.2% of Indians spend out of pocket to meet healthcare expenses. A review by researchers from the Government Medical College in Calicut, Kerala, on the increasing out-of-pocket healthcare expenditure in India showed that there has been a more than 100% increase in outpatient expenditure and 300% increase in inpatient expenditure in the last 10 years. In India, 5.6% of families manage out-of-pocket healthcare expenditure by taking out loans.
The lethal combination of lack of awareness about the scope of palliative care and lack of service providers significantly increases the cost of dying.
A 2014 systematic review on the cost-saving benefits of palliative care showed that it significantly decreases costs at the end of life. But in India only 0.4% of dying patients have access to palliative care. The 2015 Quality of Death Index report showed that there is low demand for palliative care in India due to lack of physicians and not enough public awareness. Moreover, in India there is one palliative care physician per one million population. The lethal combination of lack of awareness about the scope of palliative care and lack of service providers significantly increases the cost of dying.
Most physicians in India caring for patients with advanced illness fear legal and family backlash, especially in a scenario where violence against doctors is a serious threat. Doctors also believe that not providing aggressive medical intervention for all dying patients is illegal and fear legal prosecution for withholding these treatments. This behaviour tends to encourage providing inappropriate advanced medical care at the end of life. Lack of legal and legislative frameworks in India on advance care planning, limiting life-sustaining treatment and end of life care are the major barriers that lead to high-cost deaths. In the absence of these frameworks, physicians tend to err towards defensive medicine practice, which eventually results in inappropriate and high-cost treatment. A research study published in the Indian Journal of Critical Care Medicine in 2016, which studied 4209 patients in 124 ICUs showed that 80.5% of patients admitted to Indian ICUs are self-paying. Among the ICU related deaths in India, 25% of patients died at home following discharge against medical advice from the Indian ICUs due to non-affordability of intensive care treatment.
According to [a UN] report, denial of pain relief, palliative care and end-of-life care amounts to torture.
The cost of therapy cannot be only measured in monetary terms. What about the cost of pain, distress, needless suffering for the patient at the end of life? What about the cost of tears, guilt, lasting memories for the family? Can we ever measure these? Can the medical community in India justify their current medical practices at the patient's end of life, citing lack of legal and legislative framework? What are our moral and ethical obligations towards our fellow human-beings?
In 2013, the United Nations Human Rights Office of the High Commissioner published a special report on torture. According to this report, denial of pain relief, palliative care and end-of-life care amounts to torture. This torture takes the form of providing inappropriate medical interventions for patients dying with advanced life limiting illnesses, causing them needless pain and suffering. There needs to be a collective effort from the medical, legal and legislative communities to end this healthcare torture and bring forth holistic cost reduction.