In its March 9 order allowing passive euthanasia, the Supreme Court also recognised the right of people to leave an advance “will”, expressing their desire not to be put on life-support systems in case they were diagnosed to be terminally ill in future with no hopes for survival. But a number of people have already been leaving such instructions with their family members, telling them what they must do should such a situation arise.
Shubhada Joshi, the 62-year-old founder-director of Girikand Travels, for example, told her family in writing, two years ago, that she “should be allowed to go peacefully”.
“Why should we not plan in advance for the end of life care?” asks Joshi.
“Doctors and loved ones need to know what to do if you are no longer able to speak for yourself when suffering from a chronic progressive illness. There are so many times when terminally-ill patients are kept alive, either by breathing machines, feeding tubes and dialysis despite poor prognoses for a recovery. After two hospitalisations, my mother appealed saying she just wanted to die peacefully. So far, and not any more, was what she told us,” Joshi said. “We need to make an effort to talk about death and the need to die with dignity with our relatives. A directive gives me the right to tell the doctors and relatives, much in advance, about when life saving interventions should stop,” she said.
Sixty-five-year-old Surekha Sule, a former journalist and an independent researcher, had drafted a “will” more than seven years ago stating her wish to die peacefully. “I have given copies of this ‘will’ — call it a directive or guideline — to four people, including my husband and neighbours,” Sule says.
“There is a need to die with dignity. If I am not in my senses due to some illness then it is difficult and an extremely emotional decision for my loved ones to take,” she added. In her “will” (that The Indian Express has seen), she has given an account of the experiences some of her known ones have gone through and said she did not wish to go through similar suffering.
“My father suffered a stroke and was admitted to the ICU of a hospital where he became violent and was tied to the bed. He was in his senses and was asking me to free him,” Sule has said in her “will”. Her father survived the stroke but was totally dependent on the family and prayed for his end.
“Three days before he passed away, he could not move but was in his senses, as he kept staring into my mother’s face and tears kept rolling down his eyes,” Sule recalled. In her “will” she has asked her near and dear ones to allow her the experience of dying “beautifully and cheerfully”.
Kalyan Gangwal is another person who has left similar instructions with his family. A member of the Society of Dying with Dignity set up some three decades ago, Gangwal made his “will” about ten years ago. The society is not very active now. “However, we have in our own way, encouraged people to think about how to die with dignity,” says Gangwal who is a devout Jain and has pledged to take Sallekhana, a practice of embracing death voluntarily. The 74-year-old physician has reduced his food intake and has only one meal daily with not a drop of water after sunset.
Realising the need for standardising the procedure for people wanting to forego life support, the Indian Society of Critical Care Medicine had some time back laid down guidelines for limiting life-prolonging interventions and providing palliative care towards the end of life in Indian intensive care units. Now, with the apex court legalising passive euthanasia, the campaign by a group of people in the city championing the cause of dying with dignity has received a big support.
Shirish Prayag, former president of the Indian Society of Critical Care Medicine, along with Shubhada Joshi, noted social activist Vidya Bal, human rights campaigner Aseem Sarode, and some others have been actively promoting the right to die with dignity. Prayag said several camps were conducted last year in several districts of Maharashtra.
“The response was an encouraging one. We had prepared a tentative format of the Living will and distributed several forms across these camps. At least, 100 people evinced interest and were willing to make these wills,” Parag said.