India has been rated as one of the worst countries in the world to die, no wonder more and more urban folks want to pull up a chair, break bread and talk about end of life and living wills.
A sit-down dinner with strangers can be a bit awkward. It can be even more awkward if the conversation at the table revolves around death. In a country where birth is a celebration, talking about death is often considered a taboo subject. However, more and more urban folks, especially from Mumbai, Delhi, Hyderabad, Chennai, Bengaluru and Kolkatta are keen to pull up a chair and have a more honest and deeper conversation on death. And what better place than the humble dining table!
Imagine receiving an invite that reads: ‘Join us for death over dinner’. It is no secret that conversations about end of life are delicate, but given the fact that most of us are obsessed with living longer – eating healthy, exercising regularly – it is important to have a ‘healthy’ discussion on death as well. India has been rated as one of the worst countries in the world to die in, documented twice in the Economist’s Quality of Death index. It is not a matter of financial resources since poorer countries manage better. The state of Kerala provides better palliative and end-of-life care in its rural areas than what is available in any other metro in India.
Sharing Is Caring
At death over dinner (DoD), each person at the table gets a chance to tell stories of his/her loved ones. For many people it’s an emotional catharsis. Talking about death — and specifically one’s own death — can help avoid suffering now and later. Lest you think the concept of a death dinner is too much of a downer, there is enough laughter and witty one-liners sprinkled amid the sober discussion of end-of-life care. For Mumbai-based entrepreneur Gitanjali Ghate, who hosted a death over dinner meet at her plush flat in Bandra, the whole experience was therapeutic. Gita, who lost her parents young, says they both placed free will and dignity above everything else. “They told me and my brother to believe in our choices and maintain our dignity in the face of any social criticism. The biggest tragedy was when their respective illnesses took away, not just their dignity but also their right to chose how they wanted to live the last days of their lives. I will never forget how helpless and frustrated we felt,” shesays. According to her, initiatives like death dinner and Living Wills help address these very paradoxes, and give people a choice on how they want to live their lives and play out their deaths.
The food at dinner death can range from simple dal-chawal to a sumptuous five-course meal, but the conversation is always intense. It brings together a diverse bunch of folks, with varying levels of awareness, on the subject of death. The sharing of stories gives one a different perspective. “It made us aware that not only can we make a choice of how we want to live the best years of our lives, but more importantly, chose how we want to live the last years of our lives,” adds Gita.
Talking is Healing
Krittika Sharma, director of Death Over Dinner, RoundGlass Wellbeing Ltd, who has facilitated several death dinner conversation says, “The whole death over dinner conversation is designed as an uplifting, interactive adventure that transforms this difficult conversation into one of deep engagement and empowerment.” Krittika, who is the daughter of former IAF pilot Rakesh Sharma, the only Indian who flew aboard Soyuz T-11 to space in 1984 says, “Death can be a difficult thing to talk about. I wasn’t comfortable with it in the beginning. It’s been an ongoing conversation in our family. There is a shared understanding that we can truly retain each other’s dignity while supporting each other through living life.” She has been associated with the initiative since 2017 and ensures that people have these conversations with love and human connection. “We usually start the evening by brining a sense of gratitude to the table and acknowledge a loved one or loved ones who are no longer with us and what we admired about them. This is a beautiful way for all of us to briefly witness one another’s story. I have observed that this very ritual automatically makes people a little more relieved because they realize that none of us are alone in this human experience,” says Krittika.
Since it is a sensitive subject, each person needs to be at the table on his/her own accord. “We keep the conversations confidential so that people know that they have the safety to flow with the experience. The idea is to ask the questions in a way that people don’t feel threatened, but feel invited into the conversation,” explains Krittika.
More than 300 people ranging from 22 to 80 years of age across seven cities in India have attended death dinners. The tables have included esteemed armed forces veterans, well-known business owners, influential medical practitioners, lawyers, authors, social entrepreneurs, journalists, students, activists, artists, retired seniors and more. There are stories of love and loss of gay uncles, babysitters, kind neighbours, benevolent schoolteachers, doting grandparents and parents. A Marine Corps veteran of Iraq war shares his experience of death over dinner. “I have confronted my own mortality on multiple occasions. I have also lost many friends over the years to things like war, addiction and suicide. So I came into the death over dinner conversation with an intimate understanding of death. Yet, I walked away with profound new insights and a deeper sense of how we can collectively confront death with greater love and understanding,” he says. SS Paul, a media professional who too attended a death dinner says it was easy to talk about ones death, end-of-life decisions, how to draft a Living Wills. “I have stated in my will that my body should be given for organ donation without any religious rituals. In fact, I want my loved ones and friends to have a fabulous party after I’m gone,” says Paul.
If someone is suffering from terminal illness, people usually talk of staying positive and not giving up. A recent study published in Palliative Medicine journal states that the power of language is particularly poignant when it comes to how clinicians talk about end-of-life care. It can lead to misunderstandings and suffering. No wonder surgeon and New Yorker writer Dr Atul Gawande's book Being Mortal, which slams his own profession for letting patients down at the end of life is a best seller. Some hospitals in India have already started asking their doctors and other healthcare professionals to have end-of-life conversations with patients and their families.
In 2015, three national medical associations of neurologists, intensivists and palliative care physicians came together to form the End of Life Care in India Taskforce (ELICIT) initiative. Dr Roop Gursahani, a consulting neurologist at PD Hinduja Hospital, Mumbai, who is part of ELICIT says, “When you talk about death, 90% of the people say they would like to die at home surrounded by their loved ones. But in reality, most seniors die alone in hospitals. There is little public awareness of these issues. We need to make conversations about death natural and not forced.” According to him, a Living Will takes care of one’s healthcare decisions at the end of life. It becomes operative when you can no longer make or communicate your own decisions, but while still alive (as opposed to the estate will which begins only after death).
On March 9, 2018, the Supreme Court made ‘Living Wills’ valid. But they are not enforceable till the Government sets proper procedures. Doctors and legal experts feel the SC directed procedure is very restrictive. You can only make one if you are certified terminally ill which is often too late. Also it has to be countersigned by a Judicial Magistrate First Class (JMFC). “I have heard of only two persons in India who have actually made a Living Will as per the SC procedure. One of them is a Kanpur-based lawyer, which means he has far easier access to a JMFC than you and I can ever have. Worldwide very few countries require anything more than a witness or two for signatures on your Living Will, at the most a Notary's attestation,” explains Dr Gursahani.
However, nobody can stop you from making a Living Will and communicating it to your family, loved ones and health care providers. So the big question is how does a layperson make a Living Will? For starters, there are lots of online resources from where you can simply download the Living Will format. But the most important part of it is first to designate one or two (not more than 3) persons to make discretionary decisions because it is impossible to plan for all eventualities. Sharing the memories of the last days of his own father, Dr Gursahani says he was not in any pain or distress. “But I still regret the fact that none of his children were at his bedside in his last moments. I am surprised how eager people are for candid conversations about death,” he adds.
Dying with Dignity
Despite India being the world’s factory for opiate drugs, Indian cancer patients routinely die in pain and misery because the concerned authorities and doctors are paralysed by a fear of being labeled as someone ‘misusing’ his or her power. Surprising though it may seem, brain death is recognised only for organ retrieval. So if organ donation is not possible, many hospitals simply insist on letting the body lie on the ventilator. Sadly, many medical professionals in India are either unaware or not trained to do what is right. “The default option then is to ‘do everything’ and senior citizens die lonely, tortured deaths on life support, in hospital ICUs,” explains Dr Gursahani.
It is a known fact that the dining table is that one place in the house where one can discuss anything – right from the mundane to the most intimate and profound. During one such death over dinners, the guests had the pleasure of interacting with an old gay couple. The SC decriminalised homosexuality in India, but the LGBTQ community still lacks equal rights. In the absence of marriage or partnership laws for same-sex couples in India, many gay couples are keen to make Wills and Living Wills. “It was a big learning for me, and by the end of the dinner, all of us at the table felt that a death over dinner needs to be organised exclusively for the LGBTQ community,” adds Krittika. In today’s world of apps, speed dating, ageing and nuclear families, many LGBTQ persons find themselves lonely. In many cases, many blood relationships are too removed from the lives of LGBTQ folks. There have been instances where in the absence of a Will, the siblings and parents of the deceased gay person have claimed all the assets,leaving the other gay partner in the lurch. These and many other topics are just some of discussions that popped up at DoD. Death is inevitable but we can certainly make it more dignified, by simply talking about it with our loved ones over cutting chai or death over dinner!