'Never forget Aruna Shanbaug': Pinki Virani hails SC upholding passive euthanasia ruling, says time law caught up with society

On 9 May, a five-judge constitution bench of the Supreme Court gave its formal, full and final approval to passive euthanasia. Firstpost spoke to National Award-winner Pinki Virani whose 2009 PIL as the "next friend" of nurse Aruna Shanbaug — who had been sexually assaulted and left in a vegetative state for over 40 years — resulted in the landmark passive euthanasia judgment of 2011. While passive euthanasia was denied to Shanbaug, it was laid down as the law until the Parliament or a Supreme Court bench ruled on the matter. The 2018 judgment validates the earlier judgment and further adds to it.If the earlier judgment on passive euthanasia was a landmark one, then what is the importance of the 9 March judgment? It represents a tectonic shift in the law. Exactly seven years back, the Supreme Court's legalisation of passive euthanasia was a profound shift from the mass – caste, class, culture, religious, medical — to individual rights. The 9 March judgment not only validates it but goes beyond to add intellectual sinew and heft in a manner. Everyone reading this 500-page-plus judgement will be – I am – thankful for their superb encapsulation of how the right to life can indeed include that life which “meets death with dignity” as “a value to be aspired for”. The judgment, in context of upholding passive euthanasia for individuals with terminal illnesses, also says, “mere existence does not amount to presence.” I’m still reading the gigantic judgment, savouring its erudition, and marvelling at how liberty, privacy, writing a medical directive (if one chooses), passive euthanasia and dying with dignity, all come under the umbrella of Article 21.But the 2011 judgement did face some backlash, correct? Not the outcome of the judgement but there was some debate in the manner of its arrival ergo, whether the route taken to reach the decision was constitutional or not. When I filed the PIL in 2009 as the “next friend” of Aruna Shanbaug – who had been in persistent vegetative state (PVS) by then for more than a quarter of a century as the world’s worst sexual assault victim — it was specifically for passive euthanasia (the turning off of her feed).[caption id="attachment_1623029" align="alignleft" width="380"]

File image of Pinki Virani. Image courtesy: Penguin India[/caption]I was made aware that there were other PILs pending, which referred to broad-spectrum euthanasia (which would include active ones) and living wills as a corollary. Some time after the 2011 passive euthanasia two-judge verdict was announced – which for the first time brought PVS into medico-legal limelight as a recognisable condition — one of the earlier petitioners again approached the court to ask for expeditious hearing of their case since passive euthanasia had been legalised. The three-judge bench of that time did not disagree with the 2011 verdict though they expressed their concern on its perception, and referred it to a five-judge constitutional bench. Last week, this part has been legally settled too.  I won’t deny the stress of such a long journey – from 2009 to 2011 to 2018 – but it’s nothing compared to Aruna’s forty-plus years. Or any other patient in PVS for even one year.Along with this, the court granted the NGO's plea and laid down conditions for an advanced directive, which is a kind of very specific living will for specific situations. What is the relation between passive euthanasia and living will? There isn’t any connection between the two, strictly speaking. The 2011 judgment said that family and doctors can take the call on passive euthanasia if the patient is in specific situations like brain death, ventilator, persistent vegetative state. The 2018 judgement says those who do not write an advanced directive and are passive euthanasia-applicable, are to be treated on par with those who have written one.However, what the advanced directive can do, if people choose to write it, is free their loved ones from the guilt of having to take what tend to be very difficult decisions, most so when they are cash-strapped. Passive euthanasia is about choice, writing an advanced directive is also about choice, having the liberty to do either or both is about living, and dying, with dignity.In 2017, the court spoke about the right to privacy and alluded to passive euthanasia. How does the latter support the former? The 2018 judgement, and I paraphrase here, states that in the case of irreversible illnesses, the person’s right to privacy decreases as the degree of bodily invasion increases. Death has already set in and yet the patient’s “being” exclusively rests on the medical technology, and machines which will prolong a condition that is not in the patient’s best interest. “On the contrary, it’s tantamount to destruction of his dignity which is the core value of life.” For example there is — specifically for those with terminal illnesses and long-term PVS patients — the nasogastric tube which could be an invasion into the person’s body and therefore into the person’s privacy. Because the tube itself does not provide life in the midst of the death which has already set in. To remove the tube and retain the patient’s privacy, therefore, need not be seen as “an act of spite” or “malafide intent”.The government was drafting a bill on passive euthanasia. What happened to it? They called for public input on their draft at an email address (passiveeuthanasia@gmail.com). Since then, there has been silence on matter. That draft said it disapproved of living wills. I should add here that a living will is an umbrella term, an advanced directive is specific. They do however, have an advanced directive in the Mental Healthcare Act. They also have the decriminalisation of suicide (though, obviously, not abetment to suicide) in the same Act, thanks as much to the passive euthanasia law of 2011 which called for it.But that draft did allow what amounted to living wills to terminally-ill teenagers. On the lines of being 16-years-old and deciding to accept or reject treatment by simply saying so? Does the 2018 judgement say the same? The passive euthanasia law is understood as being applicable to all patients in irreversible conditions, age no-bar. Indian law states minors as being under-18. The 2018 judgement says advanced directives can be drawn up only by adults. I did submit, as I’m sure did countless Indians, my suggestions at that point while opposing this ridiculous inclusion that a 16-year-old teen on their deathbed could by extension be incited into taking its parents to court if they did not agree with its decision. I do not know when we will see another, hopefully vastly improved, draft bill. Meanwhile central government still has to get the long-pending surrogacy law, and then another one to control all these “fertility clinics” which are mushrooming – without qualified doctors – all over the country.Has the recent verdict made decision-making risky for practising doctors who are taking the final decision for life-support withdrawal?They are not taking the final decision. They are merely certifying that the patient is in the condition stipulated by the 2011 and 2018 judgements. The final choice rests with the family. And if there is, as per the 2018 judgement, an advanced directive drawn up as per the prescribed rules by the patient herself/himself, the doctor has to follow it. That's the compassion of both passive euthanasia judgments isn’t it — that no one person stands in judgement?Would you like to comment on the NGO who got this advanced directive judgment alongside the upholding of passive euthanasia? Let them too, never forget Aruna Shanbaug; it’s all made possible because of her.Some people criticise the 2018 judgement as they feel it’s a “slippery slope” to active euthanasia.Both the 2011 and 2018 judgements make painstaking points about the difference between the two. Active euthanasia is not permitted in India. Sure, there will always be someone who will feel that my right to refuse medical treatment when I am irreversibly ill – for example withholding antibiotics even though it means a mildly accelerated end — is the same as jumping off a skyscraper. Individuals now have the legal power to decide how much dignity their last breath deserves. What I have been observing for a while is that in Indian society, there are some who when diagnosed with advanced, irreversible cancers, choose to take only those minimum medicines which keep them comfortable. They spend more quality time with themselves and their families until they become, so to speak, passive euthanasia patients. They exercise their right to choose a dignified, final exit over long-drawn, medically-mediated deaths. So clearly it was time that the law caught up with society.Dr Abantika Pal is Medical Officer, Government of Bengal, and author of the first Bengali book on euthanasia in her state’s contemporary context.