Lack of palliative care departments in most hospitals, and the near-total absence of at-home services, emerged as a recurring theme.
Published Aug 24, 2025 | 3:53 PM ⚊ Updated Aug 25, 2025 | 12:18 PM
Karnataka Health minister Dinesh Gundu Rao at the 'Good to Go' death literacy festival at the Bangalore International Centre, Bengaluru
Synopsis: India is aging. Families are shrinking. Medical technologies are escalating. And yet, the most basic conversation — how we want to die — remains unfinished.
In a country where talk of death is often avoided, whispered about in hospital corridors, or hidden behind rituals, the auditorium at the Bangalore International Centre (BIC) on Saturday opened its doors to conversations that were both tender and unflinching.
The two-day “Good to Go” Death Literacy Festival, which began on 23 August 2025, urged Indians to look at dying not as a forbidden subject to be brushed aside, but as a part of living that deserves preparation, dignity, and dialogue.
The festival followed from the Supreme Court’s 2018 judgment in the Common Cause petition, which ruled that a Living Will or an Advanced Medical Directive (AMD) is a fundamental right under Article 21 of the Constitution, allowing terminally ill patients to refuse life-sustaining treatment.
By recognising the right to die with dignity, the Court opened a path for patients to exert autonomy over their final days.
Yet, as speaker after speaker reminded the audience, translating that right into practice is still fraught with confusion, hesitation, and gaps in awareness. Rights written on paper are of little use if families and doctors remain unable to speak openly about death. And it was this silence that the festival sought to break.
Neurologist Dr Roop Gursahani of PD Hinduja Hospital brought the room to stillness with stories from his long years of practice, framing India’s struggle with end-of-life care in deeply personal examples.
He recalled the case of an 88-year-old who died just days after surgery, compared with an earlier case of an 89-year-old pneumonia patient subjected to repeated interventions — dialysis, CPR, ventilators — despite no chance of survival.
“Don’t let them torture me,” he remembered the plea. “The sound of ribs cracking…”
For him, the shift was not medical but legal. “What changed in 10 years was 2017/18 — privacy, healthcare autonomy. In March 2018, the Supreme Court affirmed the citizen’s autonomy. One can refuse treatment. Later, in 2023, procedures were simplified. But it is still not a law.”
For Dr Gursahani, death literacy is not abstract. It is, as he put it, “overarching — a citizen’s right and responsibility to take charge.”
For Smriti Rana, Head of the WHO Collaborating Centre for Training and Policy on Access to Pain Relief, the need for death literacy became urgent during the Covid-19 pandemic, when millions of families faced mortality without preparation.
“People were forced to consider their mortality,” she said.
The real challenge, she added, is striking a balance between high-tech intensive care and community-based end-of-life care.
“Good care leads to escalation of treatment in ICUs and high-tech hospitals, which only affluent groups can afford. Others prefer to die among loved ones. What is lacking is pain management.”
She pointed to the Economist Intelligence Unit’s 2015 Quality of Death Index, where India ranked 67 out of 80 countries.
“55 million Indians are pushed below the poverty line annually because of catastrophic out-of-pocket expenditure on healthcare. A system that is supposed to ease suffering is actually inflicting more suffering when people are at their most vulnerable. Everyone becomes a victim of financial toxicity because they do not have a choice.”
Interestingly, while people argued that these AMDs were mostly for the elite, she busted the myth and said that data from Pallium India has revealed that “40 percent of those in Kerala who have written their AMDs are from the fishermen and farming community.”
Her hope, she concluded, was simple: “to normalise such discussions – it is not a terrifying doom and gloom scenario.”
Karnataka’s Health Minister Dinesh Gundu Rao brought the policy lens into the hall, reflecting on how unprepared families are when decisions must be made in crisis.
Karnataka is the first state in the country to facilitate the right to die with dignity. Speaking about how the state has pioneered in establishing medical boards in hospitals across the state to enable requests for dignified deaths.
“If the right doctor cannot advise, then what is the family member going through?” he asked in his keynote.
“Based on that, we came up with a policy. A legalised will and an advanced will can be executed. Every hospital can constitute a committee and take a decision. The entire legal process has been done. How many have registered, I don’t know yet. But we must educate hospitals too.”
He even promised to review the existing policy and address any “roadblocks” for easy implementation, showing clear intent to work towards working with the stakeholders on this one.
For once, death was not dismissed as taboo, but acknowledged as a matter of public policy.
From Karunashraya Hospice, a major driving factor behind implementing this policy in Karnataka, its medical director, Dr Nagesh Simha, spoke of how palliative care policy needs to be reviewed, and the existing policy on AMD needs its presence on a virtual platform as well.
A “Living Will” is a written document that allows an individual to state in advance the kind of medical treatment they would — or would not — want if they were ever unable to communicate their wishes.
It comes into effect only when a person is terminally ill, in an irreversible condition, or unable to make decisions for themselves. Unlike a property will, which distributes assets after death, a Living Will safeguards a person’s right to die with dignity by preventing unnecessary, invasive interventions such as prolonged ventilation, dialysis, or resuscitation.
In India, the Supreme Court’s 2018 Common Cause judgment recognised the Living Will as part of the fundamental right to life under Article 21, affirming that patients have autonomy over their own bodies and medical choices.
While subsequent clarifications in 2023 simplified the procedure for enforcing Living Wills, experts at the festival noted that awareness remains limited, and very few people have actually drafted one.
Advance Care Planning Toolkit
The central panel of Day 1– “What Does Dying India Look Like and What Needs to Change?” — laid bare the gaps and contradictions in India’s end-of-life care. Speakers, ranging from doctors and lawyers to philanthropists, highlighted how palliative care is not just underdeveloped but, in many cases, excluded.
Smriti argued that in India, one of the most marginalised groups in palliative care is ironically the affluent, as the private hospitals they often visit often do not offer it, simply because “it is not profitable.”
Other speakers reminded the audience that dying is never just about medical charts or legal clauses.
Dr Rajani Surendar Bhat, pulmonologist at Sparsh Hospitals, put it plainly: “It is not a disease that you are treating but a person whose values must be respected at the end of their life.”
Their interventions, along with others from legal scholars and philanthropists, stressed that the conversation must begin when people are well — not when death is already at the door.
The lack of dedicated palliative care departments in most hospitals and the near-total absence of at-home services emerged as a recurring theme. Audience members also echoed this frustration.
“We need mandatory regulations. Why can a hospital with an ICU not have a palliative care department?” asked one participant during the Q&A, a question that drew nods across the room.
The panel also traced the legal journey towards India’s right to die with dignity. Consultant neurologist Dr Roop Gursahani, who had assessed the Aruna Shanbaug case in 2011– when the nurse was left in a vegetative state for decades after a brutal assault–reminded the audience that autonomy cannot thrive without enforceable frameworks.
“Implementation requires laws,” he said, emphasising that advance care planning will remain aspirational until it is backed by statutory regulation.”
Hardik Dua, advocacy officer at the Vidhi Centre for Legal Policy, explained how the Aruna Shanbaug judgment had linked the right to life under Article 21 with extreme cases of withdrawal of care, but without any mention of AMD or patient autonomy.
It was only in 2018 that the SC explicitly recognised the Living Wills and AMDs, and in 2023 further simplified their enforcement–setting out clearer pathways for hospitals to withhold life-sustaining treatment in cases of irreversible illness, terminal conditions, or persistent vegetative states.
Despite the grimness of the subject, the discussion carried moments of hope and pragmatism. Organisers encouraged participants to access a toolkit for advance care planning, shared through a QR code, that offered templates for AMDs and healthcare attorney authorisation in Indian languages, including Kannada, Malayalam, Tamil and Hindi.
If the panel sessions carried the weight of law and medicine, the festival’s cultural elements brought in tenderness and imagination. A telephone booth allowed participants to speak to deceased loved ones — to say “I love you” or to ask for forgiveness.
A memory tree became an installation pinned with notes to the dead. A gallery titled Crossing Over showcased stories of rituals of dying from across communities. And as dusk fell, Bindhumalini’s music filled the auditorium with meditations on grief, longing, and release.
If the first day was about law, ethics, and lived experience, the second day of Good to Go widened the lens with cinema, workshops, and spaces for reflection.
Screenings of films like Shonali Bose’s The Sky is Pink and Akarsh Khurana’s Karwaan invited participants to reflect on grief and legacy through story.
Simultaneously, the Oral History Legacy Recordings, hosted by the Oral Historians Association of India, encouraged people to record and preserve personal narratives for loved ones and future generations.
Workshops translated ideas into practice. Children attended Circle of Life… the Invisible Connection, an interactive session on loss, grief, and legacy.
Adults learned the practicalities of drafting a Living Will with guidance from Dr Gursahani and the Vidhi Centre for Legal Policy.
In more intimate spaces, the Grief Circle, facilitated by Mumbai-based psychotherapist Sonali Gupta, offered participants the chance to sit with others in mourning and speak freely about love, loss, and hope.
“How we grieve is how we love,” Gupta explained.
“We need safe spaces for people to talk about such experiences, which are stigmatised in many pockets.”
There was also space for questions that rarely surface in public life: a workshop on organ donation and digital death, another on pet bereavement, and consultations on advance medical directives. The closing performance, Parting with Words, wove Hindi and English poetry into a theatrical meditation on parting, grief, and closure.
At PD Hinduja Hospital in Mumbai, Dr Smriti Khanna has already been running a Living Will Clinic since June 2025.
“Many individuals come with the thought of not wanting their families to take on the difficult burden of deciding for them, or of wanting to be in control in the last days of their life,” she said.
“The Good to Go festival was envisioned for this very reason – to normalise discussions around death.”
As Dr Gursahani put it, “We are testing the waters with this event, with the hope that it can be replicated in other cities. Despite the Supreme Court ruling, the idea of life-sustaining treatment still requires awareness. In order to know how to negotiate with the healthcare system, you should know its limits.”
India is ageing. Families are shrinking. Medical technologies are escalating. And yet, the most basic conversation — how we want to die — remains unfinished.
If the Good to Go festival showed anything, it is that India is finally learning to give death its voice: in law, in art, in ritual, and in the living will of its people.
The event was led by Dr Roop Gursahani, Dr Savita Batola, DIG (medical) Border Security Force, Srinagar; Smriti Rana, Dhwani Mehta of Vidhi Centre for Legal Policy, Dr Rajani Surendar Bhat, Dr Suil Kumar MM, Additional Director of Trivandrum Institute of Palliative Sciences from Pallium India, Dr Smriti Khanna and Dr Parth Sharma, Community Physician and Public Health Researcher and also was supported by team members of Nivarana.
(Edited by Amit Vasudev)
