Kathmandu— In New Delhi's All India Institute of Medical Sciences (AIIMS), families of terminally ill patients often face difficult decisions with little guidance or awareness of their legal options. While India’s Supreme Court recognized the right to die with dignity in 2018 and permitted legally documented advance medical directives – known as ‘living wills’ – allowing individuals to refuse life-prolonging treatment, practical implementation remains limited. An estimated 1.56 million new cancer cases were recorded in India in 2024 alone, adding to the growing need for palliative care and end-of-life planning, yet only a small percentage of those requiring such support currently receive it.

Limited Access To Palliative Care

India faces a significant gap in access to palliative care, with an estimated seven to ten million people needing it but only around four percent receiving it. This leaves families like that of Piyush Singh, a 29-year-old stomach cancer patient at AIIMS, struggling to understand what comes next after treatment options are exhausted. Similarly, the family of Amit, a 40-year-old battling mouth cancer for years, found themselves unprepared when doctors indicated there was nothing more they could do, lacking knowledge about palliative care or available support systems.

Landmark Court Ruling And Its Challenges

In 2018, the Indian Supreme Court affirmed the right to die with dignity as part of the fundamental right to life. This ruling allowed patients to record their wishes regarding life-sustaining treatment through ‘living wills’, nominating a loved one to make decisions on their behalf. However, despite this legal recognition, awareness remains low and implementation has been slow. A 2019 survey found that 73 percent of urban Indians were unaware of their right to create a living will, and only six percent had actually done so.

The Harish Rana Case: A First For India

In March 2024, the Supreme Court permitted passive euthanasia – the withdrawal of life support – for Harish Rana, a 32-year-old patient who had been in a vegetative state for nearly thirteen years. This case, filed by his family, marked the first instance of court-approved passive euthanasia in India. Ashok Rana, Harish’s father, explained that the decision came after years of watching his son breathe but not recover, and grappling with concerns about his future care. “He was not in that state for 13 days or 13 months, but for 13 years,” he said.

Navigating Complex Guidelines

The Supreme Court’s initial guidelines for enacting living wills were complex, requiring multiple medical and judicial reviews. These requirements proved cumbersome and impractical, prompting the Indian Society for Critical Care Medicine to petition for simplification. In 2023, the court responded by reducing the minimum experience required for review boards and allowing multiple nominees, but a comprehensive parliamentary law governing advance directives remains absent. Vipul Mudgal, director of Common Cause – the NGO that initially petitioned for legal procedures around living wills – emphasized the importance of individual autonomy: “If the families, doctors and courts can make end-of-life decisions for an individual, why cannot the individuals make those decisions for themselves?”

Cultural Barriers And Lack Of Support

Beyond legal hurdles, cultural norms also contribute to the low uptake of living wills. Discussions about death are often considered taboo in Indian households, leading families to avoid these conversations until a crisis arises. This lack of preparation leaves both patients and their loved ones vulnerable during difficult times. Dr. Saipriya Tewari, principal consultant at Max Super Speciality Hospital in New Delhi, noted that families often feel lost when told there is no further treatment available, lacking guidance on what comes next.

While the legal framework for passive euthanasia and living wills exists in India, significant challenges remain in raising awareness, simplifying procedures, and addressing cultural barriers to ensure individuals can exercise their right to die with dignity. The need for increased access to palliative care and open conversations about end-of-life planning is crucial.

(With inputs from Al Jazeera)

Originally published on abcnews.com.np.