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The Right To Die

05/09/2015 9:24 AM IST | Updated 15/07/2016 8:25 AM IST
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Open Magazine

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This article is from Open Magazine.

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By Tishani Doshi

Marte hain aarzoo mein marne ki, Maut aati hai par nahin aati (One dies longing for death but death, despite being around, is elusive)

--Mirza Ghalib, as quoted by Justice Markandey Katju, Aruna Shanbaug vs Union of India, 2011

On the homepage of Dhanraj Sangoi's cellphone is a picture of his mother soon after she turned 86. It is a close-up of her face. Her hair, parted at the centre, has been pulled back tightly to form a bun. Her ageing skin hangs at her cheeks, but her jawline is sharp and pronounced. A fall about four years earlier had severely limited her movement, but you see no perceptible frailty in this picture. Strong and healthy, she stares straight into the camera with a grim expression. But if you observe closely, you can notice the edges of her mouth curling, perhaps into a smile.

"Now see this," Dhanraj Sangoi, 62, says somewhat excitedly as though about to reveal something astonishing. He dips into a folder of images in his cellphone and hands the device over to me. These are photographs of his mother's body on the day of her funeral. It is only a few months after the earlier picture was taken, but her body has undergone a remarkable transformation. She is now severely gaunt, almost skeletal. Propped upright on a brightly decorated palanquin, her hands folded atop one another, she has been made to sit as though in a meditative posture. A white shroud has been wound around her body and a white surgical mask around her mouth.

In the pictures, relatives take turns to carry the palanquin, an unusually cheerful crowd following it. This was how the diminished figure of Vadji Sangoi was carried, seated in a palanquin, from their home in Mumbai's Ghatkopar suburb through a busy road to a crematorium.

"We were so happy that day. Can you see?" Sangoi asks. "No one is crying or mourning. This is because she is closer to moksha." In the evening, a prayer session was held where sweets were distributed to mark the celebratory nature of the event.

Dhanraj's mother Vadji had undertaken Santhara, the ancient Jain practice where individuals voluntarily and systematically starve themselves unto death. Vadji lived for 30 days after taking the vow of Santhara, a period during which she completely gave up food and took only occasional sips of water from a teaspoon till the last week of her death. During those 30 days, the entire Sangoi family, even those who had moved away to other parts of the city, took a break from their jobs to witness what to them was a remarkable event of devotion. The house swelled with outsiders, some of them acquaintances though mostly strangers. Informed through WhatsApp messages and announcements in the community newspaper, they turned up every day to watch her slow death. "There were so many visitors," Sangoi says, "we had to keep 'visiting hours' for outsiders."

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A Jain sadhvi on a vow of Santhara (Photo: Frank Bienewald/Getty Images)

As it now stands, this ancient Jain practice of Santhara has been deemed illegal. On 16 August, the Rajasthan High Court, delivering its verdict on an old writ petition, found the practice akin to suicide and declared that anyone found practising it would be charged with an attempt to commit suicide.

"Why is Santhara suicide?" Sangoi asks. "It is just the opposite. Suicide is for the depressed and the weak-willed. But Santhara is for the enlightened and strong-willed."

The ruling, as expected, has been appealed against at the Supreme Court. Whatever the eventual decision is, the judgment is bound to be momentous. The issue pits two important fundamental rights enshrined in the country's Constitution, the right to life and the right to religion, against each other.

Is life sacrosanct, something bestowed upon by God, and hence, as the argument goes, neither the individual's nor the state's to take? Or is it the duty of the state to decide an exceptional circumstance, for instance when an individual is in a vegetative state, under which life can be ended? Could it be that the right already exists with all individuals, not to be conferred upon by the state on rare occasions but something every individual is born with? That the right to life by extension also means the right to stop living, making the right to die an essential fundamental right? Why is it that death in a war is valourised as martyrdom by both state and society, but death by suicide, where no injury is brought on to anyone else, is spurned as cowardice?

These are complex questions without any easy answers. And India, like most other modern societies, is now grappling with the issue of death, specifically over who, if at all, has the right to decide on it. The debate around Santhara is just the spark for a much larger one, about the ethics, legality and morality of the ultimate freedom-- the right to stop living.

Apart from the debate over Santhara, the country is also caught up in a discussion around euthanasia, about its need and importance in modern society. Interestingly, suicide, which Santhara has been compared to, is being sought to be decriminalised. The process started late last year when the Centre announced its decision to delete Section 309 of the Indian Penal Code which makes 'attempt to suicide' an offence.

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In 2009, Pinki Virani, a writer and journalist, moved the Supreme Court pleading for the death of Aruna Shanbaug, a nurse whose had been raped and left in a vegetative state for what was then almost 36 years. Shanbaug, who spent a total of 42 years in a hospital bed in South Mumbai's King Edward Memorial Hospital (KEM) before she eventually died in May this year, had been the subject of a 1998 book by Virani.

Shanbaug's story, the terrible life she led after falling victim to a ruthless crime, became the cornerstone for India's euthanasia debate. There were, of course, several complications before the court. Should she be allowed to die since by all available evidence she appeared to be leading a life of prolonged misery? The term 'vegetative' was brought up for scrutiny. KEM staff claimed that there appeared to be some awareness in her; for instance, Shanbaug sometimes apparently smiled at them. Could somebody else, however close, have the right to judge whether her life was meaningful or not?

As the two judges in the case, Markandey Katju and Gyan Sudha Misra, remarked, "We feel like a ship in an uncharted sea." The judgment turned out to be a landmark one. It distinguished for the first time in Indian law between active and passive euthanasia. In the former, medical professionals deliberately do something that causes the patient's death: for instance, the injection of lethal drugs. In the latter--which the Supreme Court permitted in India but only after a high court was approached by the next of kin or next friend and a committee of doctors certified it--medical professionals simply stop doing what keeps a patient alive: for instance, taking the patient off a life support system.

However, in Shanbaug's case, the decision to seek the withdrawal of life support was left to the KEM staff, not Virani, as they were judged her 'next friend'. She died earlier this year, four years after the judgment, from a stroke.

To many, however, the distinction between active and passive euthanasia is contentious. Switching off a respirator, for instance, is often viewed as deliberate an act as injecting a lethal drug. In both instances, the objective is the same--the death of the patient on humanitarian grounds. Says Shekhar Naphade, the advocate who represented Virani in court, "There is no real difference between active and passive euthanasia since pulling the plug is as much a positive act." "What I wanted the court to do was define what constitutes 'death'. Could someone, for instance, in a persistent vegetative state be defined as dead or living? Aruna died long ago. She was breathing and her heart was beating, yes. But she was not alive in any real sense of the term."

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Dr Surendra Dhelia, Society for Right to Die With Dignity: "I was already firm in my belief that every individual has the right to choose to die with dignity. My father's case only made me more resolute"

In the four years since the ruling that legalised passive euthanasia, not a single recorded case has come up where mercy killing has been sought. According to Naphade, this is because there is still confusion over whether or not passive euthanasia is permissible. "Also, this entire procedure, of the next of kin or next friend approaching the high court and then seeking a certificate from a committee of doctors is time consuming and complicated," he says. According to Dr Surendra Dhelia, joint secretary of the Society for Right to Die With Dignity, a group that lobbies for euthanasia, this is because passive euthanasia is carried out like it has always been, quietly. "When a patient cannot be revived, the doctors consult the next of kin, and if the relatives so desire, life support is withdrawn. In hospital records, the cause of death is recorded as something else, cardiac arrest for instance. This has always been happening."

In Dhelia's case, his father suffered from several medical conditions, from diabetes and dementia to prostrate complications, which resulted in his being bed-ridden for two long years. To relieve him of his suffering, after consulting friends and relatives, Dhelia withdrew treatment of his father who gradually and peacefully lost his life. "I was already firm in my belief that every individual has the right to choose to die with dignity," he says, "My father's case only made me more resolute."

Four years after the judgment on Aruna Shanbaug, the Society for Right to Die With Dignity and another NGO, Common Cause, is involved in another case over euthanasia in India's Supreme Court. This petition argues that the 'right to die with dignity' should be made a fundamental right within the fold of the 'right to live with dignity', guaranteed under Article 21 of the Indian Constitution. Both petitioners further seek that the concepts of 'living will' and 'attorney authorisation' be made legally permissible. A living will, permitted in some countries, is an advanced health directive left behind by a person which specifies what the individual will want done with his health and life if a situation arises when he is incapable of voicing his opinion. An attorney authorisation gives an individual the right to appoint another individual to take decisions on his medical health on his behalf.

Although living wills and attorney authorisations currently have no legal sanction, the Society for Right to Die With Dignity already has a template titled 'Ichhamaran (The Living Will)' which has been distributed to several people, ready to be executed and produced if and when such a time comes. Dr Dhelia for instance has appointed his two daughters as his attorneys and also prepared a living will that specifies his refusal to life-sustaining medical care and treatment under certain circumstances. According to Dr Dhelia, while the living will might appear not to have any legal standing, implicit in the Shanbaug case is also the legal acknowledgement of living wills. "In the judgment, the Supreme Court explicitly stated that they were strained because [Aruna Shanbaug] had not left behind any advanced directions. This means, when argued forward, that an advanced directive can and does have legal backing."

There are others who argue that in India, where there is considerable backwardness and illiteracy, there is ample possibility for such legal wills being misused. For instance the Law Commission of India in 2006 stated its opposition to living wills, saying: '... in a country where there is considerable illiteracy and lack of knowledge of developments in medicine and technology, there is scope for Advance Directives being based on wrong assumptions... In our view, as a matter of public policy in India, Advance Directives oral or written are controversial and can lead to mischief and should be made legally ineffective...'

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Manish Gala, Kutchhi Visa Oswal Sangh: "Santhara is a way of controlling your passions and desires, the root cause of himsa (violence). Through this act, you prepare your soul to pass into death and beyond"

Every year, at least 200 individuals yield their life by way of Santhara in India, according to Kutchhi Visa Oswal Sangh (KVOS), an organisation of Jains originally from the Kutch region of Gujarat among whom the practice is particularly common. The KVOS also runs Khabar Patrika, a community newspaper that lists the names and addresses of people of the Kutchhi Jain community who have taken a vow of Santhara so that people can visit them for their blessings. The president of KVOS, Manish Gala, a businessman who lives in South Mumbai, claims around 700 instances of Santhara have taken place in the past seven years among Kutchhi Jains alone. In the first six months of this year, according to him, 118 Jains across the country took the vow, 17 of them Kutchhi.

"You need to understand that Santhara is a philosophically- informed, voluntary decision. It is not suicide or Sati," Gala explains. "It is a way of controlling your passions and desires, the root cause of himsa (violence). Through this act, you prepare your soul to pass into death and beyond. It is usually undertaken by the old and infirm, most of who are terminally ill. And even after taking the vow, the individual is free to withdraw it."

The recent judgment outlawing the practice of Santhara was filed in 2006. Then Nikhil Soni, a Jaipur- based lawyer--originally from Rajasthan's Churu district, which has acquired the reputation of being the world's Santhara capital, and where Soni is believed to have witnessed several instances--filed a case against the practice in the Rajasthan High Court.

That year, he tried to get the police to prevent a Jaipur- based woman named Bimla Devi from letting Santhara claim her life. The elderly woman, who was suffering from cancer, apparently wanted to break her vow of Santhara, but, according to him, her cries for food and water were drowned out by the bhajans being carried out by her family members and acquaintances. Since the Rajasthan High Court's ruling, Soni has apparently been harassed by calls from various Jain organisations and has since switched off his cellphone. As the lawyer who represented his case, Madhav Mishra says, "Our contention before the court was based around one simple question: what is the goal of Santhara? The answer is death. How then is it not suicide? Also, how can it be termed an essential religious practice, and hence protected, when only a few among millions of Jains commit to it?"

According to Naphade, the judgment outlawing Santhara was based on flawed logic, a line of thought that refused to consider the religious aspect of the practice.

There are various other aspects to this debate as well. If Santhara is, as claimed, a decision taken voluntarily by an individual, and if society were to come to respect an individual's autonomy over choosing his death, should the state intervene--or not--if it knows the practitioner sincerely believes in moksha, that goal of liberation from an otherwise endless cycle of birth and rebirth that he expects to attain by fasting unto death?

According to Gala, Santhara must still be taking place across the country, but far more discreetly--without wide publicity--now after the court's verdict. In his own family, his maternal grandparents undertook Santhara a few years apart. Last year, an aunt and his father-in-law also passed away after taking the vow.

"We were all very surprised when he (Popatlal Gangi Vora, Gala's father-in-law) decided to take Santhara," Gala says. Vora, Gala explains, was someone who loved life. He loved watching TV and films, enjoyed conversations, especially with his grandchildren. He had never appeared religious-minded and he had never even observed a fast. He didn't suffer from any health complication either. "We requested him to not undertake it," says Jigna Gala, Vora's daughter. "We told him we need him and his guidance for a few more years. But he was resolute in his decision and we had to agree. I think he felt his duties were over. That with all his family happy and comfortable, he felt it was time to depart."

For the next 21 days, he gave up everything--visits outside the house, TV, animated conversations with friends, little cups of tea. He did not consume anything except for the occasional sips of warm water from a spoon, which too he gave up in the five days preceding his death. He spent all his time on a bed, too exhausted to talk or even make facial expressions. Moments before he died, Gala claims, Vora clasped his hands in thankfulness.

His death was particularly tough for Het Gala, Manish's son and Vora's grandson, then only 18. "At the funeral, my relatives explained to me that his death was not to be mourned," Het says. "They told me that he had gone to a better place. But I couldn't help but cry a little."

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