A still from the film.
A still from the film.

Life support

A film on the law that recognizes the right of the terminally ill to die with dignity

In his recent book, Being Mortal: Medicine And What Matters In The End, physician and writer Atul Gawande makes a vital argument. Medical professionals around the globe are getting better at helping people live longer, but they are ill-equipped to help their patients die well. The capacity for honesty and kindness, which Gawande holds is the toughest part of the job, is the most essential element to improve the quality of end-of-life care; yet not many in the medical fraternity even necessarily see this as part of their job profile.

Director Chetan Shah.
Director Chetan Shah.

The 110-page judgement, delivered by Justices Markandey Katju and Gyan Sudha Misra in the case Aruna Ramchandra Shanbaug v. Union of India And Others, began with a couplet by Mirza Ghalib: Marte hain aarzoo mein marne ki, Maut aati hai par nahin aati (We die in the vain hope of death/ We die, but death eludes us). For the first time in India, a distinction was made between passive and active euthanasia—“Active euthanasia entails the use of lethal substances or forces to kill a person, e.g., a lethal injection given to a person with terminal cancer who is in terrible agony. Passive euthanasia entails withholding of medical treatment.... (…) Active euthanasia is illegal unless there is legislation permitting it, passive euthanasia is legal even without legislation provided certain conditions and safeguards are maintained," the judgement reads.

Pinki Virani, whose PIL sparked a debate about euthanasia.

Forty-one years ago, almost to the date, a young nurse working in one of Mumbai’s largest tertiary care hospitals, the King Edward Memorial Hospital and Seth Gordhandas Sunderdas Medical College, KEM for short, had finished her work. The 25-year-old went to the basement of the cardio-vascular thoracic centre to change out of her uniform and into her day clothes; that is when a hospital employee, Sohanlal Bhartha Walmiki, approached her from behind with a dog chain. He wound it around her neck, pushed her to the floor and raped her while asphyxiating her. The lack of oxygen to her brain damaged her brain stem.

Aruna Shanbaug, who is from Karnataka, came from a large family. She faced resistance to working in a big city, at a time when it was common for the women she knew to get married early and remain in the village they were born in. She had been working at the hospital as a staff nurse and was engaged to a resident doctor at the hospital. The attack on 27 November 1973 left Shanbaug in a permanent vegetative state. She occupies a bed in the hospital, and is taken care of by the nurses.

Virani, who states that she has “known" Shanbaug since 1982, says in the documentary that she pitched a story to her editor in the 50th year of India’s independence. The piece would look at Shanbaug’s lack of independence. In 1998, Virani wrote a book about Shanbaug, Aruna’s Story. In 2007, Virani filed for passive euthanasia under the provision of “next friend".

The 2011 ruling meant that medical assistance to Shanbaug could—with supervised medical intervention—be withdrawn. However, the court held that Virani wasn’t in a position to make that decision, as she had no locus standi in the case. And since Shanbaug’s kin—a sister who lived in Worli—had died and the rest of her family had shown no interest in taking care of her, the court appointed the KEM nurses as her “next friend", a constitutional provision that allows for either state or guardian to make decisions regarding a terminally ill person’s life in the event that they are unable to do so themselves. “Aruna Shanbaug’s parents are dead and other close relatives have not been interested in her ever since she had the unfortunate assault on her. It is the KEM hospital staff, who has been amazingly caring for her day and night for so many long years, who really are her next friends, and not Ms Pinky Virani, who has only visited her on a few occasions and written a book on her," the court observed.

When the judgement came out, the KEM nurses rejoiced, and chose not to go ahead with passive euthanasia. The newspaper articles that followed talked of how Shanbaug responded to commands to move her eyes and “breathed naturally". One article quoted a nurse saying “Our care for Aruna has become a symbol of what the nursing profession stands for"—the basis of her statement was, among other things, the absence of bed sores in a patient who has been bedridden for over four decades. The hospital dean declined to be part of Shah’s documentary film. “I can imagine the hospital’s point of view," says Shah. “Aruna is a symbol of caregiving—she is a nurse, those taking care of her are nurses. They’ve looked after her, because her family refused to take her home. They have been keeping her alive for all these years. So why end it now?"

At one point in the film, Virani addresses this, calling it the biggest irony of Shanbaug’s life. “Those who claim to love her won’t let her go because they think that suffering is in her destiny. Ironically, the very law that she has brought for India shows clearly that there is free will over fate," she says on camera.

“These are not easy decisions to make," explains Shah, who has supported Virani from the time she first filed the PIL. This film was conceptualized by the duo, and also includes stylized choreographed movements by danseuse Nupur Gandhekar, who enacts Shanbaug’s role.

Passive Euthanasia: Kahaani Karuna Ki will be screened on 30 November, 6.30pm, at Little Theatre, National Centre for the Performing Arts, Mumbai. Admission on first-come, first-served basis.