Between life and death

For 42 years, Aruna Shanbaug existed in a small room on the ground floor of Ward Four in the sprawling KEM Hospital in Mumbai. Cared for entirely by the nursing staff, Aruna had been in a comatose state since November 27, 1973, the night on which she was strangled with a dog chain and sodomised by a ward boy at KEM where she worked as a nurse. The strangulation cut the oxygen supply to her brain, and when she was eventually found in the morning, she had suffered intensive brain damage, cervical cord injury and cortical blindness.

Although every medical effort was made to revive her, Aruna never regained consciousness after the assault. She remained in a vegetative state for four decades, passing away eventually on May 18 following a cardiopulmonary arrest. Her death has brought into focus once again the issues of passive euthanasia (P.E.), living wills, organ donation, and punishment for sexual assault.

Aruna’s case was a turning point in India’s view on P.E. Her situation ignited the P.E. debate in India, which saw the court pass a landmark judgment that agreed to legalise P.E. and admit cases where “living was more painful than death”. The judgment also had other important spin-offs, which hugely benefited terminally ill people seeking help to die with dignity.

Journalist, author and activist Pinki Virani, who led the crusade to let Aruna die with dignity, fought a hard battle for Aruna’s euthanasia. She lost the Aruna Shanbaug case, but it was her relentless fight that made the Supreme Court pass the historic judgment on P.E.

Unfortunately, Aruna did not benefit from the judgment as the doctors and nurses who cared for her said she was not brain-dead and therefore the ruling did not apply in her case. “Tragically, the system failed her,” said a doctor at KEM at the time of her death. “We don’t want it to fail more people. This can really help people, particularly the poor.”

Aruna’s story In 1973, Aruna, a bright young woman training to become a nurse, was placed with the animal experimentation unit at the hospital where she had to keep a close eye on several helpers who worked with animals. Sohanlal Walmiki was one of the sweepers at the hospital whom she would apparently criticise for not doing his work; reportedly once she shouted at him in full view of the public. On the night of November 27, 1973, Walmiki found her alone in one of the rooms just before she was to change out of her uniform. He used a dog chain to attack and rape her. Aruna was found the next morning with blood splattered all over and on the verge of death. When Walmiki was caught, he said he did this to her because she kept denying him leave. He was not tried for rape as the doctors wanted to protect the reputation of Aruna, who was engaged to be married that year. Walmiki served two seven-year jail sentences for the heinous crime but was never charged for sexual assault. He disappeared after his jail sentences. Several reports even claimed that he was dead. Following Aruna’s death, a Marathi daily tracked him down to his village in Uttar Pradesh, and on May 30, Walmiki came up with his version of the story to several newspapers. Essentially, he accused Aruna of treating him badly and said that he had not raped her. He said he meant to take revenge by frightening her but in the scuffle she was badly injured. Walmiki cannot be charged now as that would amount to double jeopardy, say the police.

Aruna was initially looked after by her family, her fiancé and the nursing staff at KEM Hospital where she was treated. As years went by and she showed no signs of recovery, her fiancé moved on and her family deserted her. It was now left to the generosity and kindness of KEM’s nursing staff to care for her. In spite of attempts by the municipality, which runs the hospital, to send her home to create space for other patients, they fiercely held on to her and did not allow any interference. Besides, she had no home to go to.

She became a symbol of courage and professionalism for a team of nurses. They were proud of how they cared for her; Aruna never developed bedsores. The nurses said they always celebrated her birthday, and on occasions gave her her favourite fish curry via the feeding tube.

Pinki Virani, who heard about Aruna’s tragic situation, visited her in 1985 to write an article on her. She became a regular visitor of Aruna’s and did not just write her story but took the case further as she believed that Aruna was suffering unnecessarily. She made a case for Aruna, and a path-breaking piece of non-fiction on the right to die with dignity, Aruna’s Story, was published in 1998. The writer says “this is the book with which the author catalysed the law on passive euthanasia….”

Attempts by Pinki Virani to have Aruna examined at private hospitals for the condition of her brain death failed. Eventually, in 2009, when Aruna turned 60, Pinki Virani approached the Supreme Court as Aruna’s “next friend” to stop the tube feeding and allow the victim to pass away peacefully under medical supervision. The court rejected the plea after doctors of KEM claimed that Aruna’s medical reports indicated that she was not entirely brain-dead.

However, in the wake of the debate the Aruna Shanbaug case triggered and Pinki Virani’s plea, the Supreme Court passed a historic judgment in 2011, which permitted P.E. in India.

This involves the withdrawing of treatment or food that would allow the patient to live as opposed to active euthanasia, which could include the administration of a lethal substance to a brain-dead patient.

Unfortunately, Aruna never benefited from the judgment. Reportedly, her brain stem had been severely damaged, which meant she was technically brain-dead. However, caregivers said Aruna would show signs of recognition from time to time. Nurses believed there was a flicker in her eyes through which they read her moods. She was also prone to fits of anger and screaming, which they believed would not have happened if she was completely brain-dead.

The nurses and doctors who cared for her repeatedly said it was not part of Indian culture to allow her to die and that she was still alive and showed signs of life in small ways. They had committed to caring and looking after her and would do so until her natural death.

The Supreme Court specified two irreversible conditions to permit P.E. law in 2011: (1) The brain-dead, for whom the ventilator can be switched off; and (2) Those in a Persistent Vegetative State (PVS), for whom the feed can be tapered out and pain-managing palliatives be added, according to laid-down international specifications. “We do not know how many people benefited from this law as that’s a confidential agreement between the family and the doctor,” said Dr Prakash Naik, an internal medicine specialist from a leading hospital in Mumbai. “The good thing is at least the family has an option. Sometimes, there are really hopeless situations. It’s a drain financially and emotionally. P.E. is a humane way to pass on.” He said the real tragedy was that it was not applied in Aruna Shanbaug’s case. Dr Naik does not think KEM did a service to her. To live like that for 42 years is inhuman, he said. There are clear medical guidelines to determine whether a patient is brain-dead or not. They should have got more experts in and sorted out her case instead of prolonging it, he said.

In a setback to the pro-euthanasia crusaders, last year the Supreme Court decided to review its 2011 P.E. judgment. Acting in response to a public interest litigation (PIL) petition filed by the non-governmental organisation Common Cause seeking legal recognition for “living wills”, the court invited a five-judge Bench to look into all aspects of P.E.

A living will is a directive given by a patient about his or her medical treatment when the patient is terminally ill. The patient gives instructions when he or she is in complete control of their faculties, said a lawyer from Common Cause. The intention is to allow a person to die with dignity. Furthermore, it prevents invasive life-prolonging procedures. “Quite often, patients have expressed the desire to go, particularly seeing how much strain it is on their families, therefore we are advocating the legality of living wills,” she said.

The matter has been pending for the past two years. The court needs to decide whether to issue notice to all the States or refer the matter to the Law Commission of India. However, the lawyer expects Aruna Shanbaug’s death to activate the case again.

In July 2014, Attorney General Mukul Rohatgi said the issue had legal, social and moral aspects concerning humanity. He said the right to die merely because of pain and suffering would not be in the interest of society as it was against public policy. Any change in the law could be brought about only by Parliament, he said, adding that the ruling in “Aruna Shanbaug’s case”, which upheld the validity of P.E., was wrong.

Euthanasia debate

Arguments against euthanasia, passive or otherwise, are many. Those who argue against it are essentially concerned about the procedure being misused or abused by people with a vested agenda, said T.R Andhyarujina, Senior Advocate of the Supreme Court and former Solicitor General of India and Advocate General of Maharashtra. Additionally, there are religious beliefs. For instance, Catholics do not believe in taking a life. Some see it in the context of abetting suicide and so there is resistance from such areas, he said.

Andhyarujina has been closely connected with the Shanbaug case and the P.E. petition in the Supreme Court. In his view, the 2011 judgment had many merits, but the opposition also needed to be considered. “Aruna Shanbaug’s was a strong case for P.E. However, we had the entire KEM panel of doctors and nurses saying they would look after her until she died. They did in fact very lovingly take care of her, so it was difficult to resist that.” He says that although the definitions are quite clear, there is a thin line between active and passive euthanasia and the law has to be very stringent on this issue.

Another physician Frontline met said: “It goes against my beliefs to be pro-P.E. Ideally, we should improve our palliative care and provide better health care for the terminally ill.” To buttress his point he quotes the Hippocratic Oath, which states: “I will prescribe regimen for the good of my patients according to my ability and my judgment and never do harm to anyone. To please no one will I prescribe a deadly drug, nor give advice that may cause his death.”

It is an extremely difficult situation for doctors who know the patient has no chance of survival and is in extreme pain. It is worse when the patients are poor. “The fear, however, is that if it becomes legal, family members will be coerced or convinced into letting their family go. Agreeably, the financial and emotional burdens will increase, but assisting in death is not for the medical professional,” said the physician.

When contacted, Pinki Virani told Frontline : “What the bringing of this law has done is to bring the subject out from darkness to light by reducing the shame which the ‘Bharatiya double-standard’ thrives on— where you are expected to say something in public for the sake of society and do quite diametrically the opposite at home. More importantly, it has made the grief of the near-dear ones more bearable and less traumatic, and equally importantly, has placed the power of choice in the hands of individuals, in which I include doctors, over corporate-hospitalisation and religion.”

Pinki Virani said the Supreme Court’s decision to review the judgment did not mean its revocation. “The Constitutional Bench has been invited to ‘lay down exhaustive guidelines’. I welcome all legal clarity,” she said, adding that some of the good that has come from the judgment should be appreciated.

To begin with, the judgment provides medico-legal clarity on brain death. An amendment proposed in Parliament, a few months after the judgment, allows the doctor of the brain-dead patient to inform the relatives about the option of organ donation. Post-judgment, there have also been discussions about how rules must be relaxed on morphine for the terminally ill to ease their pain. The Government of India recently allowed for increased availability of morphine for patients in severe pain, like those in a PVS, and suffering from cancer, AIDS and the like. Third, the P.E. law asks that “attempt to commit suicide” be decriminalised; policymakers are considering this in a new mental health law. Pinki Virani says the government has also finally accepted, in its strengthened anti-rape law in March 2012, her recommendations that the law include a “vegetative” clause and that the perpetrator who puts the victim in a vegetative state before, during or after the sexual assault be categorised as “rarest of the rare” and therefore be treated on a par with being a murderer.

India’s health care or the lack of it is another subject that is related to this debate, said a liver transplant surgeon. “The wealthy are able to keep their relatives alive and provide the best medical care. The middle class manages somehow, but many are driven to despair with mounting hospital bills. The poor are the worst affected. They just take their relatives home and keep them as comfortable as possible till they die.”

What we need is to provide better palliative care and ease the pain of the suffering, P.E. or not. We have to be able to provide better and much more comprehensive health care to our poor who have so few options.

India is a country with different religions and thousands of beliefs. P.E., living wills and organ donation are not easy topics.

Yet they need to be addressed because it will serve a much larger good, said the surgeon.