Mumbai: In a culture where conversations about death are often met with a hushed “touchwood” or a swift change of subject, people plan for every milestone except the end of life, leaving its course to a chaotic mix of medical inertia and legal ambiguity.With Maharashtra now putting in place a system to store and retrieve living wills, or advance medical directives, the idea is moving from private thought to public conversation.For years, Mumbai-based gynaecologist Dr Nikhil Datar has pushed for this shift, a framework that lets individuals decide how far medical intervention should go when recovery is unlikely. Having seen prolonged suffering within his own family and among patients, he says, “Each stakeholder — doctors, hospitals, relatives — has limitations. But what the patient actually wants often gets lost.”Without a written directive, doctors are bound to continue treatment. “Even if they know it is not worthwhile, the medical code of ethics does not allow them to do otherwise,” he says. The result is prolonged intervention with little quality of life, a situation where, as he puts it, “everybody becomes a victim of circumstances”.Beyond the legal battle, the shift is being shaped by individuals quietly making these decisions.In Pune, retired finance professional Uday Thakur Desai (73) has been holding sessions on living wills in his retirement community. Although about 70 residents have completed theirs, many still hesitate. “People come, discuss, go back, and then do nothing,” he says. He believes the hesitation is deeply psychological. “It’s a taboo. People don’t want to discuss it.” Even a close friend, a surgeon, refused to make one. “Until something extreme happens, people don’t act. They read about it, but don’t relate it to themselves,” he says. Living alone plays a role. “Most of us stay alone. That makes it essential to think about these things.”For Mumbai- based homoeopath Dr Neha Seth (63), the decision was shaped by both professional experience and personal loss. “As a doctor, I’ve seen patients suffer, and families lose all their resources,” she says. “When you know it’s a point of no return, what do you do? What is the point in dragging that life?” Her mother was bedridden for four years, an experience that left a lasting impact.“We had set up almost a hospital at home. But not everyone can do that. It drains families financially and emotionally,” she says. “Back then, we didn’t have this provision. Had we had it, my mother would have been the first to say, ‘don’t do anything beyond a point’.”As she began drafting her own living will, she tried to open the conversation at home. “I put it on our family WhatsApp group, not one person responded,” she says. “We are a close, educated family. But nobody wants to talk about this.” For her, that silence is the biggest hurdle. “People brush it under the carpet. But when it happens, everyone suffers.”For retired secondary school teacher Anjana Karnik (76) and her husband, Uday Karnik (78), a conciliator for RERA, the decision was shaped decades ago by witnessing prolonged medical interventions. “After seeing how treatment was stretched despite no real improvement, we decided we should be able to choose the nature of our treatment,” she says. Acting on that belief, they had their living wills made on April 10, 2026, making them among the most recent to do so. While their family was accepting, including their children, who live overseas and gave their consent when approached, she says many others struggle. “People feel, how can I take such a decision for my parents? What will society say? That fear stops them.” She also points to systemic pressures. “Doctors may understand, but they have their own constraints. Families are divided. And the patient’s voice is often missing.”A common thread runs across these varied experiences: hesitation. This holds true even among those who understand the issue well. Dr Datar sums it up: “The older generation assumes the younger one will make the right decision. But if nothing is communicated, how will they?”A living will is not just a legal document. It is a conversation many are still unwilling to begin.Yet, slowly, that is changing. From retirement homes in Pune to clinics in Mumbai, more people are attempting to reclaim agency over the most uncertain part of life. As Dr Seth puts it, the issue is not about ending life, but preserving its meaning.
