As the dust settles after Aruna Shanbaug’s death last week, the subject of euthanasia has once again surfaced in the national consciousness. Shanbaug’s biographer Pinky Virani, referring to her as “my Aruna”, has spoken of how she was made to unnecessarily suffer for decades while she lay in a permanent vegetative state. The nurses at the King Edward Memorial Hospital in Mumbai remembered “our Aruna” and how they continued to care for her despite Virani’s best efforts for her mercy killing.

But what would Shanbaug have wanted? While the answer to this question will never be known, the time is now ripe for Parliament to contemplate arming every citizen of this country with the power to decide through living wills what they would want if Shanbaug’s fate was to befall them. But before doing so, a plethora of complex legal, ethical and moral issues need to be carefully considered.

Individual Autonomy

The doctors who examined Shanbaug on the directions of the Supreme Court dealt with the two cardinal principles of medical ethics in their report. The first principle is patient autonomy which says that the “informed” patient has a right to choose the manner of his or her treatment. To be autonomous, the patient should be competent to make decisions and choices.

According to the medical examiners, Shanbaug was not competent to make autonomous decisions regarding her treatment since she was in a permanent vegetative state. Patients in a vegetative state “cannot understand, communicate, speak, or have emotions. They are unaware of self and environment and have no interaction with others. They cannot voluntarily control passing of urine or stools. They sleep and awaken. As the centres in the brain controlling the heart and breathing are intact, there is no threat to life, and patients can survive for many years with expert nursing care”.

This was what happened with Shanbaug. But in 2011, Virani approached the Supreme Court for a direction to the KEM staff to stop feeding Shanbaug and let her die peacefully. Virani looked to assume the role of Shanbaug’s surrogate, but the Supreme Court disagreed and held that it was the staff at KEM, through the Dean of the Hospital, who qualified as Aruna’s “next friend”. Essentially, the court found that it was the Dean who had the final say on Aruna’s future course of treatment.

The Dean decided in 2011 that it was in Aruna’s “best interests” that she continues to be fed and cared for on a daily basis. It is here that the second cardinal principle of medical ethics, namely beneficence, comes into play.

Patient’s best interests

Beneficence is acting in what is (or judged to be) in the patient’s best interest. Acting in the patient’s best interest means following a course of action that is best for the patient and is not influenced by personal convictions, motives or other considerations. In the report submitted to the court, Aruna’s medical examiners pointed out that “the doctors expanded goals may include allowing the natural dying process (neither hastening nor delaying death, but letting nature take its course), thus avoiding or reducing the sufferings of the patient and his family, and providing emotional support”.

They were at pains to emphasise that “letting nature take its course” was not to be confused with euthanasia. Taking a cue from the report, the Supreme Court went on to distinguish between active and passive 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 for continuance of life, e.g. withholding of antibiotics where without giving it a patient is likely to die, or removing the heart-lung machine, from a patient in coma.”

Active euthanasia is undoubtedly illegal in India, and will amount to murder under Section 302 of the Indian Penal Code. Assessing the legality of passive euthanasia is a slightly trickier affair.

Passive euthanasia

Passive euthanasia can be of two types: voluntary and non-voluntary. As the Supreme Court put it, “in voluntary passive euthanasia a person who is capable of deciding for himself decides that he would prefer to die (which may be for various reasons e.g., that he is in great pain or that the money being spent on his treatment should instead be given to his family who are in greater need, etc.), and for this purpose he consciously and of his own free will refuses to take life saving medicines.”

Voluntary euthanasia is perfectly legal as an individual cannot be forced to undergo medical treatment. With the government also announcing its plans to repeal Section 309 of the Indian Penal Code, which makes it a criminal offence to attempt to commit suicide, a patient’s right to refuse medical treatment without the fear of sanction appears to be set in stone.

As Shanbaug could not decide for herself, the Supreme Court, in an historic judgment, decided to legalise non-voluntary passive euthanasia. The court held that a decision to discontinue life support can be taken either by the parents or the spouse or other close relatives, or in the absence of any of them, by a person or a body of persons acting as a “next friend” where a loved one is in a permanent vegetative state.

The only caveat, according to the apex court, is that the decision must be approved by the concerned High Court, which would rely heavily on the findings of a three-member panel of eminent doctors in deciding whether it is in the patient’s best interests. What the court essentially did is that it has taken the decision out of the hands of the next-of-kin and the doctors, and invested the judiciary with the power to decide the fate of a patient who lacks the requisite decision-making capacity.

Dying with dignity

A five-judge bench of the Supreme Court was constituted last year to decide whether there is a constitutional right to die with dignity. The NGO Common Cause, which has been at the forefront of the campaign to legalise passive euthanasia, submitted before the court that persons with chronic terminal diseases who are likely to go into a permanent vegetative state must have the right to execute a “living will” stating their intent to refuse treatment and die.

A living will, legal in several countries, allows a competent adult to execute an Advance Directive as to whether he or she should or should not be given medical treatment when he or she is terminally ill and not in a position to take a medical decision. The Law Commission of India, whose job it is to suggest law reform, has however opposed the grant of legal sanctity to living wills:
“In a country where there is considerable illiteracy and lack of knowledge of developments in medicine and technology, there is scope for Advance Directives being based on wrong assumptions… as a matter of public policy in India, Advance Directives oral or written are controversial and can lead to mischief and should be made legally ineffective.”

The Law Commission welcomed the decision in Shanbaug’s case but stressed the need for a comprehensive legislative framework regulating passive euthanasia. The Attorney General, however, took a different view and, speaking for the government before the Supreme Court, declared that the ruling in Shanbaug’s case, upholding the validity of passive euthanasia, was wrong. The Attorney General stressed that it was for the legislature and not the Supreme Court to debate and decide.

Invoking Ghalib

According to Virani’s lawyer Shekhar Naphade, the ruling in Shanbaug’s case should ideally have led both the legal and the medical world to debate what was meant by human life and human death and if someone in an irreversible vegetative state could be described as having human life. “The purpose was to activate Parliament on this issue but there has been no response,” lamented Naphade.

With the Attorney General having made the government’s stance absolutely clear, it (once again) falls to the wise men and women in black robes to emphatically declare the law of the land as far passive euthanasia is concerned. Till then, the citizens of this country will have to make do with the consolation of Mirza Ghalib’s poetry:
Marte hain aarzoo mein marne ki,
Maut aati hai par nahin aati

This couplet, quoted in Shanbaug’s case, roughly translated means: one dies of impatience in the hope of death, death arrives but it doesn’t.