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Photo: iStock
Photo: iStock

Conversations on living wills, death no longer off the table during pandemic

Conversations about grief, death or impending death are not a big part of Indian households

Archana Sharma, 35, had never really thought about her own death till she was hospitalized for covid-19 early in June. Breathlessness, cough and high fever didn’t leave her for a week while she was in the ICU. As she started improving, two thoughts bothered her throughout the isolation period: “What will happen to my mother?" and “Who will look after me if I’m dying and my mother is not around?"

Sharma has spent her life in Mumbai, building a career as a graphic artist and taking care of her parents. After her father’s death earlier this year, she gave up her full-time job and took to freelancing. On 23 May, Sharma fell sick. “I had diarrhoea and fever that whole day," says Sharma, who had learnt enough from newspapers and social media that these could be symptoms of covid-19. She tested positive and she was hospitalized. Those three weeks were “torturous but were a lesson on how to be prepared for the future," she says.

“Like many Indian families, we never discussed death openly. Even after my dad passed away, ma and I processed it silently. But covid woke me up to death," she says. Her research led her to ‘death cafes’, gatherings of strangers who chat about mortality, and living wills, or a directive that states a person’s wishes for medical care if they are too sick to speak. Sharma is now planning to make her living will because “I need to be prepared when I’m in my senses."

Conversations about grief, death or impending death are not a big part of Indian households. As Sneha Rooh, a Hyderabad-based palliative care physician, who brought the concept of death café to India few years ago, puts it: “When it comes to topics like death and dying, we change the subject. We ask the person to think positive as if death is negative, as if it doesn’t happen to everyone, as if it is a failure of self."

But the coronavirus outbreak has put death at the forefront. This has helped start a more nuanced and serious conversation about living wills. Though still restricted to small pockets, young and older adults are considering writing a living will, which focuses whether a person has a right to refuse treatment under Article 21 of the Constitution (right to life). It lists things like general preferences for or against life-prolonging treatment like cardiopulmonary resuscitation if your heart suddenly stops.

Dr Rooh says the themes of the recent sessions have been on “dying alone". “Each death cafe is curated by the participants. Earlier the recurring themes were difference between grief and mourning, not being able to react when someone has lost a dear one, concerns about one’s own death. But now, it’s all about covid."

Delhi’s Nilima Buch, 44, a professional singer and founder of Punah: Zero Waste Choices, a startup that promotes sustainable living, has been thinking of getting a living will since her mother-in-law died four years ago. “She had a living will, which encouraged us to make one," she says. Having a living will brings relief to family members faced with difficult decisions about whether to continue treatment, she says.

But preparing a living will is not easy. Roop Gursahani, senior neurologist at PD Hinduja Hospital, who is part of a group advocating for living wills, says besides lack of awareness, “complicated procedures" are discouraging people from drawing up their living wills.

In March 2018, living wills were made valid legal documents but the procedure is “lengthy and practically not feasible", says Dhavani Mehta, lawyer at Vidhi Centre for Legal Policy. When Mehta, her mother and grandmother went to the judicial magistrate to get their living will forms authenticated, they were told “I don’t have any instructions."

While covid-19 has definitely put a spotlight on living wills, people and the medical community need to come together and start a movement. “Doctors are taught to save lives but we also need to let go if the critically ill patient has demanded it in their living will. We are talking of an attitude shift here," says Mehta.

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