Bengaluru: Festival opens with focus on dignity in dying
India’s first death literacy festival, titled Good To Go, opened to a full house in Bengaluru on Saturday, drawing participants from across Karnataka, Tamil Nadu, Kerala, and even the UK.
The two-day event aims to encourage open conversations about death, advance medical directives (AMDs), and palliative care. It comes at a crucial time, as Karnataka has become the first Indian state to implement the Supreme Court’s 2023 guidelines legalising AMDs and the withdrawal of life support for terminally ill patients.
Attendees included researchers studying end-of-life experiences, psychiatrists, palliative care experts, and members of the public curious about living wills.
Karnataka leads in implementing Supreme Court ruling
During the keynote, Health Minister Dinesh Gundu Rao acknowledged that he did not yet know how many residents had drafted an AMD, but said he was considering making one himself to encourage others.
Rao stressed that hospitals must adopt advance care planning practices and educate patients, adding that he was open to reviewing existing policies to address “roadblocks” in their implementation.
His remarks were followed by Dr Nagesh Simha, medical director of Karunashraya Hospice, who said the state’s palliative care policy needs urgent revision. He also called for operationalising a virtual platform to help citizens draft AMDs more easily.
End-of-life care and financial burden
Festival director Smriti Rana of Pallium India highlighted how AMDs are not limited to the privileged. In Kerala, 40% of people who have written AMDs are fisherfolk and farmers, motivated by the desire to protect families from the financial strain of prolonged medical care.
“They don’t want their families spiralling into financial toxicity, their children dropping out of school, or their homes mortgaged,” she said.
She also pointed out a paradox: affluent patients are among the most neglected in palliative care because private hospitals often avoid offering it, deeming it “unprofitable.”
Gaps in palliative care in India
A panel discussion on “What Does Dying in India Look Like and What Needs to Change?” revealed systemic shortcomings. Participants and audience members noted the absence of palliative care departments in many hospitals and the near non-existence of at-home care options.
One audience member asked, “Why can a hospital with an ICU not have a palliative care department?” The call for mandatory regulations received strong support from both speakers and attendees.
Legal journey of the right to die with dignity
Dr Roop Gursahani, consultant neurologist, revisited the landmark Aruna Shanbaug case, which first brought the issue of euthanasia and patient rights into public debate. He emphasised that proper implementation of advance care planning requires robust laws.
Hardik Dua, advocacy officer at the Vidhi Centre for Legal Policy, explained that while the Shanbaug case linked the issue directly to Article 21 (right to life), concepts like AMDs and patient autonomy emerged later. The Supreme Court rulings in 2018 and 2023 have since broadened the framework of patients’ rights in India.
Optimism and tools for the future
Despite the heavy subject, the festival offered moments of hope. Organisers provided a toolkit for advance care planning, accessible via QR code, with templates for AMDs and healthcare attorney authorisations in multiple regional languages, including Kannada, Malayalam, and Tamil.
The second day of the festival will feature workshops on drafting AMDs and legal guidance, equipping participants with practical tools to make informed choices about end-of-life care.
Conclusion
With Karnataka leading in implementing Supreme Court guidelines, India’s first death literacy festival marks an important step toward normalising conversations around death, empowering patients, and building a more compassionate healthcare system.