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Common Cause and Lokniti Programme of the Centre for the Study of Developing Societies (CSDS), launched India’s first Status of Policing in India Report (SPIR 2018) at the India Habitat Centre on May 9.

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Real-Life Cases

PERSPECTIVES FROM REAL-LIFE CASES

Should One Exercise a Choice or Go on Living a Tormented Life?

Trishala Roy*

The story of porter Dennis Kumar is rather unique. According to several media reports, Kumar earns a living carrying passengers’ luggage in the Kanyakumari district of Tamil Nadu. But his family is unlike that of other coolies. His five-year-old son, Danny, suffers from Symptomatic West Syndrome, a debilitating condition that has left him blind, deaf, and in a vegetative state. There were some complications during his birth, perhaps as a result of medical negligence. Then, during the first week of his life, the glucose in his bloodstream plummeted but the doctors failed to detect the anomaly. As a result, Danny needs constant supervision. He is unable to do anything for himself and remains in a state of constant suffering.

With a meagre earning of `12,000 a month, Kumar cannot afford to sustain the medical treatments required. He has requested the government to provide assistance and pursue a case of medical negligence against the erring hospital, but to no avail. The impoverished porter constantly struggles to provide for his family, helplessly watching as his son continues to suffer. He and his wife have petitioned the government to allow them to end their son’s suffering by means of active euthanasia. They are of the opinion that if the government cannot help supplement the family’s paltry earnings and treat Danny, it should at least have mercy on him and allow him to die with dignity, rather than let him prolong his life of agony. So far, their request has been denied every time.

The Existential Nature of Human Life

Cases like Danny’s seek clear answers from not just the government or the hospitals but from the whole society. Such cases force us to think about the meaning of human life. The issue becomes even more complex with further advances in medical sciences and the advent of life prolonging medicines and equipment. Despite perpetual uncertainty about what exactly encompasses life, human societies have generally agreed on one thing: we as individuals do not have the power to take life. However, the state’s power to take away a citizen’s life to penalise deviant behaviour needs to be differentiated from its authority to grant mercy killing to suffering individuals. Modern societies and states continue to grapple with this ethical dilemma. The compelling argument is if human life is more than just our physical being, defined by experiences and interactions, then why should someone who is suffering intensely and is devoid of such experiences be forced to stay alive? This reasoning brings us to the subject of active euthanasia.

Appeals to the Government

As for India, there are many cases similar to that of Dennis Kumar and his family. People with debilitating conditions who cannot be provided for by the state, are often left with no other recourse but to ask to be allowed to die with dignity. In 2015, a sweet shop owner from Agra named Mohd. Nazir sent a letter to the President of India, requesting permission for active euthanasia for six of his eight children. They had been diagnosed with Canavan disease, a degenerative condition that gradually paralyses the body, often causing seizures as well as leading to hearing and vision loss. This is a curable disease, but unfortunately, Nazir was unable to afford the treatment. He demanded that the government should either provide his family with the financial means to treat his children, or allow him to take their lives and end their suffering. His request was denied.

Earlier this year, Shashi Mishra and her daughter Anamika Mishra from Kanpur wrote to the President requesting active euthanasia. Both mother and daughter are suffering from muscular dystrophy which leads to increasing weakening and breakdown of skeletal muscles. Shashi’s husband passed away 15 years ago and Anamika claims there is no one to look after the family since her father’s death. Their days are filled with agony because they cannot afford treatment and wish to be freed from this painful existence. Previously, upon writing to the President about their deplorable situation, they had received financial assistance of Rs 50,000. While they were grateful for the help, the amount did not cover their medical costs for more than a few days. Their request for active euthanasia has also been denied. 

A Break from the Norm

Besides those who face devastating lifelong disabilities or suffer from excruciating medical conditions and want to be relieved of suffering, there are also some who have simply lived a full life and are ready to move on. In Mumbai, Narayan and Iravati Lavate, 88 and 78 years old, respectively, have requested active euthanasia because they believe they are no longer of any use to the society. The couple do not have any children, and none of their close relatives is living. They feel they are being forced to stay alive against their will and that it is a waste of the country’s resources. Further, they think it is cruel on the government’s part to expect them to wait to die till they are afflicted with some serious ailment, most likely to also cause them suffering. Narayan claims, “the President has the powers for showing mercy to those on death row. We are serving a life imprisonment and the President can show us mercy by allowing us to end our lives” (As quoted in The Hindu, dated January 10, 2018).

One might wonder, if they are so intent on killing themselves, why have they not committed suicide? It is for the simple reason that an attempt to commit suicide does not guarantee death: whether they jump from the roof of a tall building or hang themselves, there is always a slight chance that they will survive. The couple have even gone so far as to commit their bodies and wealth to the government after their deaths. As a last resort, they have asked the President to make an exception for them and grant them permission for active euthanasia. Their request has so far been denied.

Is Active Euthanasia the Answer?

In three of the four cases discussed, active euthanasia has been sought as a last resort out of sheer frustration. In each case, the first demand is for the state to provide support in the absence of the ability to afford treatment. The root of this issue, then, is not mercy killing, but that of an ineffective and affordable health care system. In a debate on the programme Epicentre, anchored by Marya Shakil and telecast on CNN-News18, a critical care doctor Sumit Ray mentions that “the inability of a society and a state to provide good quality and free public healthcare to a person in need cannot be an excuse to take that person’s life”. He avers that, “the disability by itself does not stop one from living a qualitatively good life” (As quoted in News18 dated June 19, 2018). Ray then gives the example of theoretical physicist, Stephen Hawking, who suffered from ALS (Amyotrophic Lateral Sclerosis). ALS is a neurodegenerative disease " The root of this issue, then, is not mercy killing, but that of an ineffective and affordable health care system. “ that affects motor nerve cells in the brain and the spinal cord. It is a progressive disease, much like the ailments which have compelled certain Indian citizens to request active euthanasia. By this logic, Hawking should have been allowed to die. Had that been the case, the world would have lost one of the greatest minds of the 21st century. More importantly, his family would have lost a dearly loved member. Instead, he was provided the requisite healthcare by the National Health Service (NHS) of the United Kingdom. Hawking himself conceded that “[he] would not have survived” if not for the excellent care provided to him by the NHS (As quoted in The Guardian, dated March 14, 2018). Hawking’s case illustrates how the state needs to improve its system of delivering effective and affordable health care to its citizens, which in itself can reduce the number of mercy killing requests. 

A Dangerous Precedent 

Since the lack of an effective healthcare system forms the backbone of this discussion, it is important to consider the attitude of Indians towards disability in general. People with disabilities are frequently pitied, segregated or even worse, discriminated against. There is little to no infrastructure in place to make common spaces accessible to them. Taking into account an all-pervading environment of indifference and apathy, a cautionary note needs to be sounded. Using any kind of disability as a reason to perform active euthanasia sets a dangerous precedent, especially in cases where disabled individuals are not in a position to give informed consent. If the courts allow one family to perform active euthanasia under specific circumstances, that case can then be used to justify thousands of mercy killing requests. The influx of requests could also slow down the judicial system as a whole.

The Mumbai couple truly are outliers within the frame of this debate. However, their case brings the discussion to an ethical precipice. The Lavates cannot be the only aged individuals who are ready to bid adieu to this world. If we allow them to fulfil their wish and die peacefully, then once again, we set the precedent for misuse of law. However, it is equally important to evaluate the situation from the other side. What if they feel imprisoned by this life? As citizens of this country and world, they also have the right to exercise their free will, to determine their fate.

An Ethical Dilemma

The questions arising from active euthanasia debates are highly complex. These, combined with the layered cultural fabric of India, makes the issue truly burdensome for our Courts and legislature. On the one hand, there is the question of quality of life. Each individual does have the right to live a dignified life, as upheld by the Courts in India time and again. But should we continue living a tormented life when living a dignified life becomes impossible? While the Supreme Court has held that the right to life includes the right to a dignified death, it only goes so far as to allow passive euthanasia, and not the active one. 

On the other hand, there is the question of ethics. Is it ethical to actively take away one’s life just because an individual needs assistance while performing his/ her daily functions? What if that person has lived a full life and is ready to die? How can we claim to live in a democratic and just society if individuals are not given an equal opportunity to exercise their free will? Until these conflicting positions are reconciled, there will be no conclusive answers to the vexed question.

References

“Elderly Mumbai Couple Seek ‘Active Euthanasia’”. 2018. The Hindu, January 10, 2018. https://www.thehindu.com/news/ national/other-states/elderly-couple-seekactive-euthanasia/article22413855.ece  (Accessed 20 June 2018)

News18. 2018. “Epicentre with Marya Shakil”. Filmed February 6, 2018. https:// www.news18.com/videos/india/watchepicentre-with-marya-shakil-69-1651763. html (Accessed 19 June 2018)

Sample, Ian. 2018. “’I Would Not Have Survived’: Stephen Hawking Lived Long Thanks to NHS”. The Guardian, March 14, 2018. https://www.theguardian.com/ science/2018/mar/14/i-would-not-havesurvived-nhs-enabled-stephen-hawking-tolive-long-life (Accessed 21 June 2018)


 

April-June, 2018