Doomed to a slow death

Print edition : April 08, 2011

Pinki Virani. She says Aruna would not have wanted to live a subhuman life. - WETWERTWERTWERTWETET

Interview with writer and journalist Pinki Virani.

THIRTY-EIGHT years ago, Aruna Shanbaug, a nurse working at the King Edward Memorial Hospital in Mumbai, was sexually assaulted and strangled by a sweeper. The attack caused severe brain damage and left Aruna in a persistent vegetative state. The former nurse is looked after by a team of doctors and nurses at KEM. According to several reports, Aruna cannot move or see. She just lies in a comatose state in a small room in the hospital. Her family abandoned her some time ago, so she has no visitors and not many are permitted to see her. By all accounts it is a tragic existence.

For more than a decade, author and journalist Pinki Virani has been writing about Aruna. Her book Aruna's Story is a truly moving account of a young girl who comes from a small village in Karnataka to become a nurse in Bombay. Unfortunately, she is raped and strangled just before she is to get married. The book looks at the many injustices meted out to Aruna as well as the broader issues of safety for women in India. The author also speaks about euthanasia and the care of the incurably ill.

Pinki Virani has been fighting a valiant battle for Aruna's right to live in dignity. She says that from her research on Aruna, she knows the former nurse would not have wanted to live this subhuman life. Therefore, she petitioned the Supreme Court on behalf of Aruna Shanbaug, arguing that the continued existence of Aruna is in violation of her right to live in dignity. On March 7, 2011, in a path-breaking ruling following the petition, the court said it would henceforth allow passive euthanasia for patients who it decided met the criteria it set. However, with regard to Aruna it would not permit discontinuing her life support. In an interview to Frontline, Pinki Virani speaks about Aruna, her condition and the verdict.

What is your reaction to the Supreme Court ruling?

Because of Aruna Shanbaug this tragic woman who has been denied the choice because of those who profess to love her by touting her bedsore-less life no Indian hereafter need suffer the way she does. The Supreme Court has permitted passive euthanasia; its carefully prescribed parameters can be read on its website where the judgment has been uploaded.

Aruna's other gift through this same landmark judgment is that there could be a boost in organ donations, once again positively helping millions of Indians. The judgment provides clarity on the definition of brain death. Healthy vital organs are wasted while arguments rage over the medico-legal definition of brain death.

Aruna Shanbaug's case has brought forward the debate on euthanasia. Those against it say that even passive euthanasia could be dangerous. Given your research and deep involvement in this case, could you give us your comments on the larger picture?

Parliament must add to the Supreme Court guidelines to protect individual rights. Meanwhile, individuals could examine the possibility of writing their Living Will as also talking to those they trust about the DNR, or do not resuscitate, on a formal basis. Informally, it's followed across India anyway, be it in villages or in cities.

The court has lauded your efforts. Yet it has not done anything for Aruna. Is there a next step?

At the very beginning of the hearing, the judge announced that he had checked on my work and was empathetic with the national and rights issues all four of my books raise. Later, the amicus curiae told me he was familiar with my book Once Was Bombay. The judgment states kind words; I accept them with humility, and with the knowledge that Aruna is now a private grief which I will always carry in my heart.

The KEM head has given several official statements on Aruna's condition to the media. But could you tell us a little about her condition over the years. For instance, would you feel her condition is deteriorating?

This is subjective since her caregivers insist she likes it. May I suggest that everyone exchange places with Aruna merely mentally, for a month, never mind 37 years to decide for themselves on the definition of life with dignity.

Sixty-two years old. Locked in a room, with no direct sunshine touching the body for over three and a half decades. Teeth fallen off due to infected gums, no dentist permitted. A feeding pipe running from nose directly to stomach. Body can't take all that mush being poured through the pipe, prone to diarrhoea, yet catheter not used. Fingernails continue to grow as waste matter, cut into palms fulfilling most criteria for patients in a permanently vegetative state. Such patients do not have favourite foods, music, people; their smiles are not reactions to external influences. Largely brain-dead due to massive brain-stem injury; incurable. Cortically blind. Cannot speak. Or walk. Feral sounds from a brittle skeleton, which atrophied from the time the nurses stopped physiotherapy. Alternating between catatonia for hours on end and shrieking. In acute pain; hospital doctors prevented me from doing medical tests in 1998, which would have helped administer the right medicines. After the initial days, no medicines prescribed, none given. Doomed because force-feeding will not be slowly tapered off, soothing palliatives not added to a very painful, and very slow, death.

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