Published on: August 1, 2025

When my father passed away, more than 10 years ago, the first person I called after my sisters, was my cousin G. He knew how to contact our regular family priest, the religious supplies that were needed for the funeral and the basics of preparing the body. Another cousin drove off to book a slot at the crematorium. Other relatives pitched in: putting in an obituary notice, organizing food for the likely visitors, booking the hall for the ‘chautha’ ceremony and so on. But organizing funerals is probably the only part where our families and communities have an inbuilt competence. When I began working in palliative care some years later, I found that most laypeople and medical professionals had no clue about end of life, dying, death and loss. As I write this, a cousin has terminal malignancy and is admitted in an ICU. Her main carer, her sister has no clue of what to expect, and the doctors seem to be equally tentative. Much of this in India has to do with a general reluctance to talk about death and preparing for it, either for oneself or people one cares for. Getting people to talk freely about dying and death is an essential but difficult part of death literacy. Most of us do not even know when we are beginning on this journey so how do we put in place a practical system that works for individuals, families and communities?

Noonan and colleagues (2018) defined death literacy “as a set of knowledge and skills that make it possible to gain access to, understand and act upon end-of-life and death care options”. This is practical wisdom and is usually acquired through the actual experience of caring for someone who is dying. The authors break this down into four components. Knowledge begins with end-of-life planning, including estate wills (for property) and living wills or advance medical directives. If death is likely to occur at home, we also need to know the resources we will need for caring, including palliative and allied health services. Skills include the physical acts of caring for a dying person,planning funerals and connecting to the person after death through bereavement. The most important is however communication: talking about the end of life with everyone, including those dying. This also translates into understanding what is important and negotiating assertively and confidently with doctors and the rest of the healthcare system. Experiential learning often begins with the transformative effect of being part of a network caring for someone dying at home. This allows one to see death as a normal part of life.Most people now see deaths occurring in hospitals and we do not appreciate or understand how friends and family can be involved in caring at home. All the above needs to translate into social action providing resources that can be used by all. Individuals are also then primed for their own advance care planning.

In order to invite, ease and normalise conversations around these difficult topics, the Advance Care Planning Collective is pleased to present a first of it’s kind Death Literacy Festival, in Bengaluru on the 23 rd and 24 th of August. The 24 th of August marks the death anniversary of Dr. Elisabeth Kübler-Ross, one of the first western doctors to study death and dying with rigour and compassion. This death literacy festival incorporates the most essential elements pertaining to this subject, and has activities and installations that will appeal to people of all ages. We intend to make this a traveling festival, and hope to make it to a city near you. More details will follow shortly.While most people consider the subject of death and dying inauspicious and taboo, it is essential to explore advance care planning while you’re healthy.

Remember, “it’s always too early, until it’s too late.” Let’s keep talking.

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