Ever been to a death cafe in India? | Tracking recent initiatives around death literacy in the country

Explore the importance of death literacy in India through personal stories and initiatives, fostering open conversations around mortality.

As primary caregiver to ageing and ailing seniors at home, death is always on my mind these days. I see it inching its way forward, slowly and certainly, as limbs fail and memory fades. How would you like to go, how would you like to be remembered, I want to ask. But like most Indian families, our conversations around death are limited to the medical and pragmatic aspects of it — medication, wills, division of assets... Its emotional aspect remains unaddressed.

That is why Manisha Sheth’s story strikes a chord with me. A Pune-based environmentalist who runs the social enterprise eCoexist, Sheth grew up watching her mother, Dr. Madhuri Sheth, care for sick and dying relatives at home. She watched as they passed on, removing the unfamiliarity around death. “I grew up in a family where death was a very common topic of conversation. My mother wanted to normalise death and familiarise us with it. It was not a taboo topic,” she says.

When Dr. Madhuri was diagnosed with a tumour at 86 and chose not to get any invasive treatment for it, Sheth had had a lifetime of preparation. Her mother eventually passed away at home, in her arms. “Even on her last day, she didn’t want a doctor. She had brief panic attacks, just once or twice. I could only stand and watch without getting carried away by my own emotions or fear, because all my life she had prepared me for it. In her final moments, I was telling her ‘ma, let it go now, please, don’t hold on anymore’, and she nodded and left. So, we walked through it together. This was all only possible because we were death literate,” Sheth says. She calls her mother’s passing the most powerful experience of her life.

Inspired by how talking about death with her mother enhanced her caregiving journey, Sheth now supports others to do the same through a close-knit online study group of 50 members, called Dying To Learn. Few of us grow up with the exposure to death that Sheth received. On the contrary, many in India consider death inauspicious to talk about, making us a death-avoidant society. This cultural reluctance to talk about death results in people avoiding important decisions such as end-of-life care, organ donation, and even funeral preferences. To add to that, information about options such as Advanced Care Planning, Advanced Directives (AD) and eco-friendly funerary practices is inaccessible and scattered. In the 2015 Quality of Death Index, which ranks end-of-life care globally, India was 67th out of 85 countries. In another ranking, the 2021 Outcomes of Quality of Death Index, India was at no. 59.

The COVID-19 pandemic may have brought death into focus, forcing many of us to face our mortality. But did it make us more death literate? Perhaps from a practical point of view of organising assets, but a lot still remains to be done. This is where the growing number of death literacy initiatives can help.

In 2020, researcher Krittika Sharma who works in behavioural design launched Maajhi, a death literacy platform, to spread awareness of the concept. “Death literacy is the development of knowledge, skills and language that individuals need to understand, access, and make informed choices about their end of life and to support their loved ones,” she says. Maajhi means ‘ferryman’ in Hindi. “Many cultures believe that the ferryman takes the soul across after death,” explains Sharma, whose father, Retd. Wing Commander Rakesh Sharma, the first Indian citizen in space, suggested the name.

Maajhi offers people a chance to write their obituary and conducts death meditation sessions, among other resources. There is also a toolkit called ‘Last Dialogue’ to help the bereaved navigate their loss. The 21 prompts of Last Dialogue were inspired by conversations at the Bengaluru hospice, Karunashraya, and developed in assistance with individuals in design, psychology, medicine and academia. Sharma’s favourite prompt is ‘What was the one thing that your loved one never took credit for?’ It gently nudges participants to remember a loved one, not with a heavy heart but with a fond memory.