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Journalism of Courage
“I want to die with my head on your lap, listening to our younger son singing.” This was a conversation Dr Sushma Bhatnagar, 63, had with her husband while discussing their end-of-life plans. As a doctor specialising in palliative and end-of-life care — and one of her sons following in her footsteps to become an onco-anaesthesiologist — death has never been a taboo subject in her house. Yet, she wanted her wishes to be well-documented to ensure that her family would never have to deal with any guilt if she ever developed a terminal illness.
As head of the living will clinic at the Indraprastha Apollo Hospital, New Delhi, Dr Bhatnagar became the first person to sign an eight-page document on the kind of care she would like to receive in case a terminal disease made her incapable of making the decisions. She said she did not want to receive cardio-pulmonary resuscitation or CPR, ventilation, dialysis, chemotherapy, radiotherapy, any surgery or even IV fluids if her doctors determined that these interventions would only be “prolonging her process of dying.”
The clinic has been started with the aim to get people talking about death with their family members before they are in a critical condition. “We have been conditioned to do whatever possible to prolong life. Families — and even doctors — find it hard to stop. But, after a point, any treatment just extends the suffering of the patient and prolongs the process of dying. And, at this clinic, we want to guide families to come together and decide on the kind of care a patient should receive when there is no hope of survival,” says Dr Bhatnagar. Since these delicate decisions can be extremely difficult for patients and burden families with guilt, she believes conversations, dialogue and then putting the decision on paper could help everybody concerned.
Along with counselling, the clinic also has a copy of a pre-drafted living will that lets people choose the kind of care they would receive and whether they would like to receive such care at a hospital, hospice or at home. The clinic can designate their healthcare representative — any person, regardless of whether they are the partner, family or friend — who can take all medical decisions on their behalf.
Importantly, the pre-drafted will also make provisions for LGBTQ+ individuals — a person can specify the gender they would like to be identified as by the caregivers and the person they would like to be referred to as their partner. As Bhatnagar says, “The aim was to make the process as inclusive and as comfortable as possible.”
Many patients and their families, whom she counselled on end-of-life protocol, wished that the living will service was available to them. “It would have saved us a lot of heartbreak if we could have had this conversation before my wife got so sick that she could not talk. She was diagnosed with stomach cancer at a very late stage. We tried everything, from surgery, to chemotherapy and immunotherapy. I also gave her homeopathic medicines and ayurvedic kadha. Dr Bhatnagar patiently advised us to take her home when she stopped responding to her treatments,” says Ankur Choudhary, whose 32-year-old wife passed away after happily watching television with her children at home. While she was in the ICU, the family could visit her only for an hour a day. Her mother, brother, her six-year-old son and a year-old daughter spent as much time with her as possible during her last two months.
“Had she died in the ICU, I would have been informed by some staff perhaps hours later. At home, I was with her when she passed away. She left with a smile,” said Choudhary.
Kabir Narain, whose 73-year-old father was diagnosed with late stage bile duct cancer, was able to have an honest conversation with him. Narain senior refused chemotherapy and ventilation as the doctors had said that he would live at best for six to eight months. “I stood my ground even when my extended family said that we should continue treatment. This was possible because Dr Bhatnagar helped us in accepting the diagnosis and have an open conversation about it. But many may not want to or may not be able to have the conversation. That is where this clinic comes in.”
“Many hospitals put patients on a ventilator and then are not sure whether they can legally remove it. This document lets them explicitly know the wishes of the patient,” says Narain. He has seen the case of another person in the family who spent months on a ventilator because this type of guidance was missing. “Every hospital has patients on ventilators, who the doctors know will not get better. The hope is that having a living will in place would help patients die with dignity, at their home with their families,” says Dr Bhatnagar.
