Aruna Shanbaug is a name that has hovered on the edge of our subconscious for 40 years now. It blurs over and then sharpens when an anniversary date comes up and images of nurses cutting cakes intrude into our drawing rooms. We pause a while, horrified by the retelling of her rape and assault that left her a vegetable in a hospital ward in Mumbai, then move on to the other horrors that life in India presents for our regular consumption.
Aruna’s assailant sodomised her after choking her with a dog chain, not enough to kill her but enough to cause permanent brain damage, paralysis, and cortical blindness. Journalist-writer Pinki Virani took up her case. In 2010, the Supreme Court set up a medical panel to examine Aruna and declared her to be in a permanent vegetative state. In 2011, the Supreme Court passed a judgment that clarified that passive euthanasia was not illegal. It was a momentous step forward but one that ironically kept Aruna outside its pale because her erstwhile colleagues, the nurses in KEM Hospital who cared for her, refused to let go. And so Aruna lives on — unable to see, talk, move or emote, and fed through a tube in her nose.
I had forgotten most of this sad hopeless story. Until I was invited a couple of weeks ago to watch Kahaani Karuna Ki , a documentary by Chennai-based filmmaker Chetan Shah on passive euthanasia. And there it was again, overwhelming in the enormity of its horror. Chetan’s film talks about passive euthanasia through the Aruna Shanbaug story, but the story would be incomplete without Pinki Virani, who became Aruna’s patron, campaigner and quite literally her voice.
In the film too, Pinki’s voice rings through, passionately and fiercely fighting for a body, as she says at one point, that is not alive but refuses to die.
I ask Chetan what moved him to make the film and he says it’s a topic that he has always felt strongly about. “Death is a taboo subject in India,” he says, “nobody wants to even talk about making a will.” Death is indeed superstitious for Indians, who consider the mere mention of it inauspicious. This means that when a person is in a terminal illness or left brain dead by an incident, there is enormous pressure on the family to continue medical and palliative care so that they might not appear uncaring or callous. “Families feel a great deal of guilt,” says Chetan, “to take the decision to withdraw life support.”
Life support could be a ventilator or, as in Aruna’s case, a feeding tube. And passive euthanasia is the withholding or withdrawal of life support or further treatment to a patient who is terminally ill or in a permanent vegetative state. Understandably, it is a traumatic decision for the family but what is often left out of the equation is the patient’s best interest or right to live and die with dignity. Finally, with the 2011 judgment, we saw clarity on an issue that has haunted thousands of families over the years. The 52-minute documentary talks to the people involved in that historic judgment — the lawyers; Virani, who initiated the case, her sister and husband, and her former editor — and recounts just how the case was prepared and fought. It also points out that even with the right to make end-of-life choices allowed, people cannot exercise the right because the concept of a ‘living will’ is still not legal in India. A living will is a directive in which a person expresses a desire to be allowed death rather than be kept alive through artificial means. The Supreme Court is at present considering the plea to allow it, with the biggest objection being the fear of its abuse.
“It is important,” says Chetan, “because its absence leaves both families and doctors helpless.”
Besides the emotional trauma, there is the inevitable issue of finances. There are hundreds of poor families who cannot afford prolonged life support. Aruna’s family withdrew after the first years; it’s her former colleagues who care for her.
The film looks at all these issues that surround passive euthanasia through three narrative devices — interviews with Pinki and other key people; a stylised retelling through dance and movement that, as Chetan explains, serves to distance the subject and prevent the emotional manipulation of viewers; and finally a look at living wills through the story of one man with throat cancer.
The fight is not yet over. As Aruna lies on a hospital bed, imprisoned for life, people like Chetan and Pinki continue the battle to make it easier for patients and care-givers to take informed and compassionate decisions about the need for dignified death.