European Respiratory Society

Need to prioritise: end-of-life decision-making in India

A. Singh

To the Editors:

I read with interest the recent article “End-of-life decision-making in respiratory intermediate care units: a European survey” by Nava et al. 1, wherein the authors have beautifully covered the epidemiology, practice, behaviours and attitudes towards end-of-life decision-making in respiratory units in Europe. However, there are certain points regarding end-of-life decision-making in developing countries like India that merit attention.

First, Indian data on withdrawal of or withholding intensive care in terminally ill patients is sparse. Only two studies 2, 3 have been performed in five centres across the country with varied results. A unicentric survey on the practices of end-of-life decision-making in North India 2 noted that 78% of patients received full resuscitation; even in the 22% who were classified as receiving limitation of care, 18.8% were actually transferred out of the intensive care unit (ICU) terminally (left against medical advice) for financial or other reasons. Only 1.6% of ICU deaths had do-not-resuscitate orders and another 1.6% had withholding of life support 2. A second study carried out at four centres in Mumbai 3 revealed that 34% of deaths had limitation of therapy terminally. Approximately 25% of these patients were not intubated terminally; 67% were initially intubated and ventilated but failed to recover and, subsequently, had no further escalation of therapy; and 8% had withdrawal of therapy 3.

Secondly, apart from the educational, social and cultural differences, the healthcare system in India differs substantially from that in Europe. In Europe, government and national health insurance account for 70% of total health expenditure 4 compared with 20% in India, where 80% of the total healthcare bill is paid by the patient or their relatives 5.

Thirdly, the ethical and legal status of withholding and withdrawal of life-sustaining therapy from critically ill patients in India is ambiguous. Concepts like autonomy and death with dignity have not been explored in any meaningful way by the constitution. Euthanasia and physician-assisted suicide are not legal. Consequently, physicians are often reluctant to proactively limit therapy.

Fourthly, India has less than one hospital bed per 1,000 people and an even lower number of ICU beds 5.

Given the scarcity of resources and growing needs in India, it is the right time for physicians and allied healthcare societies to educate the government and public about the magnitude of the problem, and to start a healthy dialogue in order to reach a constitutional and legal directive with regard to withholding and withdrawal of care in critically ill patients.