The debate on whether a person has the right to seek a dignified death has been raging for some time now. With India joining the list of nations where passive euthanasia is legal, experts tell SHAlINI SAKSENA that even though the nod is a welcome move, courts will have to tread with caution and examine each case on its own merit
The withdrawal of life support by the doctors is in law considered as an omission and not a positive step to terminate life. The latter would be euthanasia, a criminal offence under the present law in UK, USA and India
— Supreme Court of India, 2011
Kolavennu Venkatesh (Hyderabad): Suffering from debilitating muscular degeneration, this 25-year-old chess player had filed a plea for euthanasia with the Andhra Pradesh High Court. He wanted to donate his organs so that others could benefit but the plea was turned down despite the fact that he had been suffering since he was six years old. The High Court and the medical fraternity studied the ethics of euthanasia minutely but the judges finally disallowed the harvesting of Venkatesh’s organs because the AP Transplantation of Organs Act bars donation by a person who is not brain-dead. Venkatesh died three days after the court’s ruling.
Karibasamma (Bengaluru): She is suffering from intervertebral disc prolapse, commonly known as slip disc, for the past 15 years. The ailment has kept her bed-ridden and impacted her spine, tearing its outer fibrous ring and swelling the soft central portion. The tears in the disc ring trigger inflammatory chemical mediators which cause severe pain. The retired school teacher, who is also diabetic, is in an oldage home in Davangere with a monthly pension of Rs8,968. Since 2003, she has been seeking permission to end her life. In this connection, she even wrote to the Prime Minister’s Office in 2010.
Though the SC has legalised passive euthanasia for the terminally ill patients in a permanent vegetative state, active euthanasia continues to be illegal. The Bangalore High Court turned down Karibasamma’s on grounds that she is neither terminally ill nor in a permanent vegetative state.
Aruna Shanbaug (Mumbai): Her’s is the most heart-rending story. On the night of November 27, 1973, Shanbaug was sexually assaulted by Sohanlal Bhartha Walmiki, a ward boy on contract at the King Edward Memorial Hospital. Sohanlal choked her with a dog chain and sodomised her. The asphyxiation cut off the oxygen supply to her brain, resulting in brain stem contusions and cervical cord injury apart from leaving her cortically blind. Since the assault in 1973, her condition has been described as semi-comatose and vegetative. Thirty-seven years later, on December 17, 2010, the Supreme Court admitted the plea to end Shanbaug’s life made by activist-journalist Pinki Virani. The three-member medical committee subsequently set up under the Supreme Court’s directive, checked Shanbaug and concluded that she met “most of the criteria of being in a permanent vegetative state”.
However, it turned down the mercy killing petition. “We have no indication of Aruna Shanbaug’s views or wishes,” the judges said. A judge who reviewed a CD that was shown said: “She is certainly not brain-dead. She expresses her likes or dislikes with sounds and movements. She smiles when given her favourite food. She gets disturbed when many people enter her room and calms down when touched gently.” The nurses attending on her also testified that she was not a case of euthanasia at all and the court gave cognizance to their testimony
While Shanbaug was denied euthanasia, activist Pinki Virani’s petition sparked off a nationwide debate with the Supreme Court giving a landmark judgement — it legalised passive euthanasia in India. And three years after giving patients in permanent vegetative state the right to passive euthanasia, the Supreme Court recently said the issue needed to be looked at afresh and set up a five-judge Constitution Bench on deliberate on the issue.
“We invite the Constitution Bench to go into all aspects of the matter and lay down exhaustive guidelines in this regard,” a bench of Chief Justice P Sathasivam and Justices Ranjan Gogoi and SK Singh said recently.
“There are two Supreme Court (SC) judgments that come into play here. In 1996, a bench in the Gian Kaur case had said that the right to life did not include the right to die but ruled that the right to live with dignity included the right to die with dignity. The second was the 2010 Shanbaug case. India has joined the list of countries like Belgium, Columbia, luxembourg, Mexico, Switzerland, Australia and New Zealand where passive euthanasia is allowed. In a nation where relatives go to any lengths to save a patient’s life whatever the cost, the fact that the apex court ruled for passive euthanasia is remarkable. But despite this, every plea needs to be looked at on a case-to-case basis,” Sankarshana Meeyala, senior associate at PXV law Partners, says. There is a huge difference between passive and active euthanasia, he adds.
In fact, euthanasia can be classified into three categories: Voluntary, non-voluntary and involuntary. Passive and active euthanasia are sub-divisions of these types. Therefore, passive is ‘letting a person die’ and active is giving them a ‘lethal injection’ under medical supervision. The reason why the issue is under debate is because, as human beings, if we have the right to live with dignity, we should also have the right to die with dignity.
“There are many people who are terminally ill. There are cases where the person can’t even drink water on his own. He is totally dependent on others. At night, if he wants to turn on his side, he can’t. In such cases, euthanasia is a way out. But the very idea of letting a person die before his time is up is difficult for us to understand, let alone talk about it,” Meeyala says.
“Religions like Hinduism, Buddhism and Jainism have no discomfort with people wanting to kill themselves voluntarily as we believe in rebirth. In Christianity, this is a sin,” Dr Devdutt Pattanaik, physician-turned-mythologist, says. In fact, some districts in Tamil Nadu have been, for decades, relieving their elders of life if they are in pain or have been ill for a long time. Though the custom usually applies to those 60 and above, sometimes even the young in continual pain are “relieved” of life.
The reasons for a growing demand for euthanasia in India is directly linked to changing social milieu. “There are too many old and sick people. lack of money, time and interest in caring for them, increasing nuclear families and the use-and-throw mentality of the new generation are some reasons,” Pattanaik says.
He also tells you that some doctors are against euthanasia because they are afraid it will be an escape route for people who do not wish to care for the ailing old. “On the flip side, caring for old and sick patients generates a lot of income for a lot of people. In health matters, emotions and economics are often at loggerheads. Also, death has political and economic consequences,” Pattanaik explains.
Founding partner of Associated law Advisors lira Goswami agrees and tells you that there are some issues we hate to talk about, death being one of them. “There are many people whose suffering will be reduced if passive euthanasia has been legalised,” Goswami says but cautions that one needs to tread with care while looking at a plea for euthanasia. “One has to rule out extraneous reasons like a property dispute, or see that the request has not come because the family doesn’t want to take care of the patient who in in permanent vegetative state (PVS). The genuineness of the case has to be ascertained. This can be done with a panel of doctors and a five-judge bench,” Goswami opines.
However, there are certain aspects that continue to be in the grey. For example, how does one explain the situation where the family pulls the plugs on a member who is on ventilator. Does it amount to murder, assisted suicide or will one call it euthanasiaIJ “Private medical care in India is expensive and often unaffordable. Not everyone can take the expense of keeping a person on artificial life support system for a long period. In any case, the person is already dead if it were not for the machines that are working on him. In such cases, if one takes the decision to remove the artificial life support on doctor’s advice it falls into a grey area,” Goswami explains. “It is a decision that the family takes in consultation with the doctor,” she adds.
The impact of the Passive Euthanasia law has been that it has allowed the individual the profound choice of free will over fate. “Besides, providing medico-legal clarity on brain death, the law has also heightened vision on organ donations. Healthy vital organs get wasted while arguments rage over brain death. An amendment proposed in Parliament, a few months after the judgement, allows the doctor of a brain-dead patient to inform the relatives about organ donation. The doctor can talk to an irreversibly ill patient about consenting to organ donation as a cadaver through authorised committees,” Pinki Virani, human rights activist and a national award winning author, says.
“After several stake-holders cited the Passive Euthanasia law, the Government in February 2014, amended the rules to allow for a more humane availability of morphine to hospitals. Further, the passive euthanasia judgement asks that ‘attempt to commit suicide’ be decriminalised. This is being considered by policy-makers in the proposed mental health law,” Virani tells you.
But how does one take the consent of a person in a permanent vegetative to give him euthanasiaIJ “It specifies two irreversible medical conditions under which passive euthanasia can be practised: Brain-stem death (essentially, full brain-death) and persistent vegetative state. Brain-death is, relatively-speaking, easier to map. It is PVS which is harder to fathom. If doctors looking after a patient are in agreement that, indeed, it is PVS, they can now legally inform the families to this effect. The families, too, can legally ask the doctors the same questions without violation of ethics. If the response of the doctors is a final diagnosis of irreversible PVS, the families then consult lawyers for passive euthanasia. That the patient is not in a position to ask for passive euthanasia is taken care of by the law,” Virani explains and says that it is due to many complexities that Shanbaug was denied euthanised.
“Aruna Shanbaug, last year on November 27, completed 40 years in PVS only because of the feed. She is also largely brain-dead but not completely brain-stem dead. The passive euthanasia judgement also states that her current care-givers can approach the Bombay High Court for the slow tapering off her feed ‘should they change their mind’. Unlikely that this will happen since they are all municipal employees (the hospital is funded by the Brihanmumbai Municipal Corporation) and there are enmeshed complexities — for my Aruna — which follow as a consequence,” Virani says. She adds that it is important that there be a living will where you are able to state how much medicine you want and how much treatment you want, and till what stage you want it, in the event of your being either in PVS or brain dead. “This living will is the aspect that a PIl in Supreme Court said should be allowed, now that there is passive euthanasia in the country. All of it has now been referred to the Constitution Bench,” Virani explains.
It is not just about leaving behind a living will. There is a section which says that if one has the right to live with dignity, one should also have the right o die with dignity. “Today, living will and voluntary euthanasia (terminally ill person of sound mental health) don’t have legal sanction in India. But it should be legalised. After all, if the person has the right to life with dignity (under Article 21), one should also have the right to die with dignity if one’s life has become a burden. But in such cases, consent is necessary. So, if there is a living will, it makes it easy. However, one has to have a certificate of mental competency to make such a will. Another option that is available is to appoint a constituted attorney to take the decision of behalf of the patient if he is in PVS,” Dr Surendra Dhelia, secretary of Society for the Right to Die with Dignity, says.
In fact, he tells you that if a person is suffering and every day is a living nightmare, instead of forcing him to live, one should allow him to take a decision on whether he wants to live. “If the person so desires, he should have the freedom to choose — whether he wants to live a semi-vegetative life or if he wants to die peacefully,” Dhelia says.
As, the most well-known supporter of euthanasia Dr Christiaan Bernard said: “The prime goal is to alleviate suffering, not to prolong life. And if your treatment does not alleviate suffering, but only prolongs life, that treatment should be stopped.”
Passive Norms
The Supreme Court has laid down a seven-step procedure for obtaining the consent of a patient for passive euthanasia:
nWhere the patient is in a physical condition to give consent, termination of medical assistance is permitted and there is no need for any more approvals. However, withdrawal of life support to a person in a permanent vegetative state or one who is otherwise incompetent to take a decision in this connection can only be undertaken after following certain guidelines of the Supreme Court — a decision has to be taken to discontinue life support 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 friend. It can also be taken by the doctors attending on the patient. However, the decision should be taken in the best interest of the patient.
While there are not as many cases of euthanasia as one may see in Belgium which saw 1,432 pleas in 2012, up by 25 per cent from 2011, India has had its share of petitions, all of which have been rejected. Take the case of Jeet Narayan of Mirzapur in Uttar Pradesh who, in 2008, pleaded for euthanasia for his four sons — Durgesh (22), Sarvesh (18), Brijesh (13) and Sushil (10) — all crippled and paralysed below the neck. The four were detected with muscular dystrophy at age five. Even for basic needs like moving, bathing and eating, they are dependent on their parents. The plea was denied