Daily Times

She was always impeccably dressed; her house was always spotless, her pots and pans always bright and shiny, her embroidery and knitting skills surpassed those of many a fine artisan. Her home was always open to everyone; she was agile and made the best aloo gosht in the world. She was Khala Jee, my grandmother’s elder sister.

Somewhere in the mid-1980s Khala Jee fell seriously ill and was confined to bed; slowly, as time progressed, she was unable, without assistance, to go to the bathroom, change her own clothes, sit-up, walk or even eat. An agile and dignified Khala Jee was reduced to a mere skeleton, bed-ridden and unable to stop herself from soiling the sheets. It was extremely painful for all those who had known her all their lives and loved her to see her in so much pain. Worse than the pain was the helplessness and agony in her eyes as she communicated the humiliation and suffering, with silent tears trickling down her weathered, hollowed face, unable to form words any longer. When I got married, I went to visit Khala Jee, and she was ever so happy to see me though no longer to extend her hospitality and love as before; even while bedridden her mind was fully functional. She gestured to Mamoo jee, her husband, to give me something so I should not leave empty handed, and this happened on every visit thereafter. Khala Jee’s pain and suffering got so bad that my grandmother used to pray to God to give her ‘parda’, to end it, to take her last surviving sister, to spare her the indignity and humiliation. Khala Jee finally passed away after five years of being bedridden.

Dignity in Dying is a UK-based organisation that demands the right to a dignified death with choice over where one dies, who is present and treatment options, with access to expert information on options, good quality end-of-life care and support for loved ones and carers and control over how one dies, the symptoms and pain relief and an active role in planning one’s own death. The organisation advocates the choice to assisted death for the ‘terminally ill, mentally competent adults who meet strict safeguards and feel their suffering has become unbearable’.

Euthanasia, also known as ‘mercy killing’ is defined as the intentional killing by act or omission of a dependent human being for his or her alleged benefit. Assisted suicide, a form of euthanasia, is when a person ‘provides an individual with the information, guidance, and means to take his or her own life with the intention that they will be used for this purpose’. ‘Physician-assisted suicide’ is when a medical doctor assists a person to end his or her life. Euthanasia is illegal almost in every part of the world, except the Netherlands, Belgium, Luxembourg and two states in the USA: Oregon and Washington.

The Indian Supreme Court (ISC) gave an extensive judgement on euthanasia in 2011 in Aruna Ramachandra Shanbaug’s case. Aruna was a nurse and was raped by a ward boy/sweeper in November 1973. The rapist choked her with a dog chain, cutting off the oxygen to Aruna’s brain; she was left cortically blind with brain stem and cervical cord injuries and has been in a persistent vegetative state (PVS) ever since. Pinki Virani, a journalist, filed a petition for euthanasia, which came up before the ISC, and though no permission for mercy killing was given, the ISC allowed passive euthanasia in India, subject to safeguards and guidelines. Passive euthanasia is defined as ‘withholding of medical treatment or withholding life support system for continuance of life e.g. withholding of antibiotic where without doing it, the patient is likely to die or removing the heart-lung machine from a patient in coma’. The ISC distinguished active euthanasia from passive by stating that in the former something is done to end a patient’s life while in the latter ‘the doctors are not actively killing anyone; they are simply not saving him’; no measures are taken that would prolong or preserve life. Passive euthanasia is legal even if there is no legislation as there is no law that condemns a person who did not actively kill anyone for failing to save another’s life. India’s Law Commission (LC) had already advocated passive euthanasia in its 196th Report, in Aruna’s case, as per the 2012 Report of the LC, the ISC has laid down ‘in the case of incompetent patients, specific permission of the High Court has to be obtained by the close relatives or next friend or the doctor/hospital staff attending on the patient. On such application being filed, the High Court should seek the opinion of a Committee of three experts selected from a panel prepared by it after consultation with medical authorities. On the basis of the report and after taking into account the wishes of the relations or next friend, the High Court should give its verdict. The ISC judgement declares: ‘the above procedure should be followed all over India until Parliament makes legislation on this subject’ and the learned judges stated “we are laying down the law in this connection, which will continue to be the law until parliament makes a law on the subject.”

In Aruna’s case the ISC categorically held that “a decision has to be taken to discontinue life support either by the parent or the spouse or other close relative or in the absence of any of them, such a decision can be taken even by a person or a body of persons acting as a next friend. It can also be taken by the doctors attending the patient. However, the decision should be taken bona fide in the best interest of the patient.” However, since Aruna’s parents had died and other close relatives had abandoned her, the KEM Hospital staff were deemed to be her next friends as they had cared for her over 37 years, and not Virani. The hospital staff had clearly expressed that Aruna be allowed to live, as she was not brain dead, the ISC ruled that should they decide to withdraw life support for her at some stage in the future, they would have to apply to the High Court for permission.

There is an increasing demand for euthanasia in the west, not only by the terminally ill but also by people faced with the possibility of dementia or Alzheimer, chronic depression, disabilities, loneliness and the like, the concept of life is linked to quality of life and not quantity. The arguments against euthanasia focus on the fact that governments will refuse to invest in health and palliative care as well as misuse for personal purposes, like inheritance. A patient who is mentally competent can refuse medical treatment that prolongs life; in fact, many in Pakistan do. Hospitals often refuse to take in patients who are terminally ill or who have little chance of recovery and ‘advise’ the family to take them home and make them ‘comfortable’ with medication.

Khala Jee’s cancer was inoperable; all was tried to keep her ‘comfortable’, but how does one make a mentally competent person comfortable in the indignity he/she feels? Is keeping brain-dead patients on life support undignified. There should be dignity in dying but not by taking another’s life intentionally and actively, but more than that there should be no indignity in living.

The writer is an advocate of the High Court