Dr M. R. Rajagopal, Chairman of Pallium India, writes:
The judgement of the Supreme Court pertaining to validity of “advance medical directives” is reassuring. It reiterates the value of life, not only in its length but also in quality, accepting death as the inevitable consequence of life and ensuring some preservation of dignity to its very end.
It is sad to see that the confusion regarding the use of the word “euthanasia” still persists. The word euthanasia refers to an act with the intention of ending a life. How can “allowing natural death” be given the name euthanasia even if we use the prefix ‘passive’? The Indian Council of Medical Research is due to come out with the definition of terms relating to end-of-life care on Monday, 12 March 2018. Let us hope that it ends the confusion, once and for all.
Every life has to end some day. When I near the end of the road, most material things cease to be important. My degrees, my car, my bank balance, all will be useless for me. The only thing that would still be valuable is the love that I give and the love that I receive. The human touch, the kiss on the forehead, some loving words of farewell, they will be all-important. Those are precisely the priceless things that would be denied to me in a cold sterile intensive care unit.
I personally have already prepared a document expressing my wish not to be subjected to aggressive medical interventions when facing an incurable terminal illness with serious suffering. With today’s Supreme Court judgement, my wishes will become valid and legally binding on the medical profession. This means that when the time comes, I now have a chance to go with some dignity, hopefully with some of my loved ones by my side instead of being subjected to inhumane, aggressive, futile treatment. To make this possible, I should have access to palliative care so that my pain, breathlessness or any other suffering can be relieved, my fears or anxiety can be alleviated and that I can be in some peace socially and spiritually too. Just as Canada passed a legislation in 2017 making palliative care a mandatory right, we need to ensure access to palliative care.
It is certainly necessary to put in protective measures to prevent abuse of the provision for advance medical directives. At one look, the procedure prescribed by the Supreme Court appears to be too complicated. When I am in agonizing suffering on a ventilator in a hospital, the hospital board will have to meet, study all documents and arrive at a decision. They then have to inform the collector. Let us hope that he will be free and able to act on that day. He sets up a board which studies the documents and arrives at a decision. How many days will that take? Then the decision goes to the magistrate who has to personally visit the patient and then issue the required order. How long will that take? And all this while, I shall be in that cold intensive care unit in agonizing suffering.
Thought processes in this matter seem to be limited by the sensational cases like that of the late Aruna Shanbaug. But this is not only about the occasional person who goes into vegetative state and stays alive for a long time. This is about thousands of people with terminal illnesses who go on ventilators in tertiary hospitals every day. This can potentially apply to all of the 8.2 million people who die in India every year who can afford to go to tertiary hospitals with facilities for artificial ventilation.
The draft of the proposed law “for protection of terminally ill patients and medical practitioners” is still pending with the government. When it is eventually passed by the Parliament, let us hope a citizen-friendly law emerges.