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While the Supreme Court has issued notices to states and union territories seeking their views on legalising passive euthanasia, the families of comatose patients Shruti, Najma and Amit refuse to even discuss the issue. They think they are being unjust to their loved ones
On 16 July, when the Supreme Court issued notices to all states and union territories seeking their views on a plea for legalising passive euthanasia, 55-year old Nirmala sat in a private hospital room reading the Hanuman Chalisa. Not an avid watcher of TV or a reader of newspapers, Nirmala is not familiar with the term; but her 28-year old daughter Shruti has been in a coma for a year and a half now. Nirmala has no time to focus on matters such as the SC directives—she reads the holy scriptures, chants mantras, visits temples and focuses her thoughts on getting Shruti out of coma.

Shruti, the daughter of a mid-level government employee, went into coma days after falling from a staircase, following a domestic quarrel with her husband after a month of marriage. The doctors attending her gave up all hopes six months later.

Though her husband and his family did involve themselves in the beginning, they have stopped visiting the hospital and inquiring after Shruti’s condition. Her mother Nirmala is unfazed by their attitude and has held on to the hope that her daughter will wake up one day; but as the days progress, Nirmala’s father has come to believe that his daughter may never wake up.

Though doctors have categorically told the parents that there is no hope for Shruti, her parents have made offerings at various temples, consulted astrologers, clairvoyants, Pranic and Reiki healers in the hope that the doctors may be proved wrong. “Every one of them has told us that Shruti will never be alright again. We don’t want to give up hope. She’s young, she may wake up one day,” says Nirmala whose health has also deteriorated in the months spent nursing her daughter.

The medical costs have run into the crores, completely draining the family of all its resources, including their house and savings. “Every day is a battle,” says Nirmala. “We do not know where the money for the next day’s bill will come from. My son and his wife want us to let go and do not support us financially. So there is just her father and me left to fight this daily battle.” She does not cry as she feels that it will weaken her resolve to take care of Shruti.

In yet another case. in February this year, 48-year old Hyderabad resident Najma, a mother of three, was discharged from a well-known hospital in Mumbai after a prolonged battle over accumulated dues. She had slipped into coma following a reportedly flawed administration of anaesthesia during a hysterectomy surgery in 2008. The doctor’s error has cost the family Rs 8 crore and put Najma into a permanent vegetative state. Three months after Najma slipped into coma, the doctor who had administered the anaesthesia was found dead in her room. Police suspected that the doctor had committed suicide, probably out of guilt.

Najma’s husband owns a tobacco manufacturing unit in Andhra Pradesh, and in the six years that have passed, he has had to keep travelling between Hyderabad and Mumbai to attend to his business, children and bedridden wife. Though he had sought a patient discharge, the hospital was unwilling to agree, as the dues had mounted. After a prolonged legal battle, the hospital agreed to waive the Rs 8-crore dues. Najma has been reportedly taken to Ukraine for further treatment.

In another hospital in Mumbai, 27-year old Amit, a victim of the bomb blast in a first class compartment of a suburban Mumbai train on 11 July 2006, lies in a permanent vegetative state. He has been in this condition since the day he was first admitted. At the time, Amit was just 19 years old. Doctors are unwilling to commit themselves to a time frame for his recovery, and since Amit is a victim of a terrorist attack, the State has paid compensation; but it is still not enough to cover the mounting hospital bills. Like Shruti’s parents, Amit’s parents too have turned to the Almighty for help.

His father is well aware of passive euthanasia and its legality in India, but is staunchly opposed to it. He believes that no one has the right to take away a life, and so, Amit’s family continues to sit by his bedside in the hope that there will be some change in his condition.

“Coma care is not easy. It is strenuous and takes its toll on the family,” says Roshan Jacob, social gerontologist who has set up a Centre for Comatose Patients in Bangalore. “The initial enthusiasm of looking after comatose patients tapers off. Families cannot continue to look after comatose patients over long periods of time. When doctors realise that there is no hope they push the relatives to take the patients home,” says Jacob, who is a firm proponent of passive euthanasia.

The 12-bed facility run by Advantage Seniors has eight comatose patients at the moment. Four passed away this month, though in the two years since the facility has been set up, four comatose patients have recovered as well. Though many of the patients are from in and around Bangalore, the last two years have seen patients brought in from other cities as well. Of the most recent, two are from Mumbai, one is from Ahmedabad and two from Chennai.

Jacob says that even though his patients are in coma, they are given a daily bath. “Their clothes are changed and their hair is combed. I believe in making them look good. Who knows, but maybe these patients too feel good. They are made to sit on a wheel chair and taken to the verandah for fresh air. I believe that the end should be comfortable. I offer dignity, care and compassion,” said Jacob.

In response to a petition filed by the NGO Common Clause some months ago, the SC recently sought responses from states and union territories on the need to legalise ‘living wills’. The SC has appointed former solicitor general T R Andhyarujina as amicus curiae to assist in the cases relating to legalising euthanasia.

The Centre had, in its submission to the SC, argued that passive euthanasia is a form of suicide which cannot be allowed. This has yet again triggered a debate on passive euthanasia which was legalised by the Supreme Court in 2011—but with strict guidelines to prevent abuse. This verdict was in response to the plea of activist-author Pinki Virani, filed in 2009. The plea asked for the right to euthanize her friend Aruna Shanbaug, a nurse, who following a heinous rape has been lying in a permanent vegetative state in a special room of the King Edward Hospital in Mumbai for the last 40 years.

Former SC judge Markandey Katju had in 2011 delivered a landmark judgement on passive euthanasia and supported the decision through practical reasons. An excerpt from the decision says, “Who’s going to pay for the patient if they are in coma state forever? There has to be a practical view and the life support system should be withdrawn. There are huge costs involved to keep a person on heart and lung machine. The family will go bankrupt. To avoid any kind of misuse, the High Court has been involved. The HC will consult a panel of three doctors before the life support system is taken off in case of passive euthanasia,” judge Katju had then said.

The Law Commission while reviewing the SC order of 2011 had stated that for “competent patients who have not taken informed decisions, a doctor can take a decision to withhold or withdraw medical treatment if that is in the best interests of the patient”.

However, for the families of Shruti, Najma and Amit passive euthanasia is not an option. They refuse to even discuss it thinking that they are being unjust to their comatose patients.

Many believe that doctors also make mistakes in diagnosing a patient’s condition and severity of condition, therefore if euthanasia is legalised, personal autonomy and choice will be severely compromised. According to sources, presently, passive euthanasia is being practised by many doctors in case of comatose patients but this is only known to the immediate family of the patient. “It is going on. The doctors are advising families with patients in the ICU with no chances of recovery to give them an informal go-ahead to stop medications. Often the doctors with the permission of the family will wean the patient off the ventilator and let the patient die,” said a source in the know of such thing. “This never comes to light as both the family and the doctors keep quiet,” said the source. “In such cases when passive euthanasia is applied I have seen family members going through guilt, anger or bitterness,” said the source.

Interestingly, doctors say that in the case of male patients (not the old ones) the families will go through any lengths to ensure that care is given to them. However, in the case of women coma patients few families are willing to keep on going. Female comatose patients face quicker abandonment from their families, say doctors.

Studies in the Netherlands, where euthanasia is legalized, have found that voluntary euthanasia can progress on to become involuntary euthanasia. In 1990, a study by the Netherlands Government found that over 1,000 people had been killed without their consent. In 1995, the number was 900. In its 2001 findings The Lancet had estimated that Dutch doctors had euthanised around 3,000 patients and also assisted in the suicides of about 140 patients. However, in 840 cases Dutch doctors had ended lives of patients without the explicit request of the patient, says The Lancet. The Netherlands has a very liberal law pertaining to euthanasia. The courts there are now permitting euthanasia not only for the competent terminally ill but also for comatose patients. Even infants with serious handicaps and people suffering from severe depression can also be euthanised, say Dutch courts.

A group of doctors, a mix of Indian and foreign-origin, have started an online chat service wherein the relatives of comatose patients can seek answers to their queries online. A majority of the queries relate to the cost involved and the time frame for recovery. Jacob too feels that families find it necessary to budget for comatose patients. “The first question often asked is how much the care will cost and the next is the time frame for recovery. Families of such patients need sustained counseling. That is absent in India,” said Jacob.

Studies have found that about 40 per cent of the comas are drug induced. About 25 per cent are caused by lack of oxygen reaching the brain. In 20 per cent cases it is caused due to strokes, trauma to the head, malnutrition or abnormal glucose levels are the catalyst in 15 per cent cases. Aruna Shanbaug is the longest living comatose patient in the world, said doctors. Earlier, Elaine Espisito of Tarpan Springs (Florida) was comatose for 37 years, the second largest recorded period after Edwarda O’Bara who was comatose for 42 years. While Espisito died on November 25, 1978 at the age of 43, Edwarda of Miami came to be known as the Sleeping Beauty. She died at age 53 on November 23, 2012.

Edwarda’s doctor Wayne Dyer wrote a bestseller - A Promise Is A Promise: An Almost Unbelievable Story of A Mother’s Unconditional Love And What It Can Tell Us - on the care given to her by her family.