A living, talking person suddenly goes silent on you. The person is not dead – but is no longer alive, at least to you. Or maybe is medically alive, but no longer communicates the same way. If you are the next of kin, what are your duties? How do you respond to the doctor’s advice to switch off the ventilator or opt for more aggressive treatment, which may help your loved one to live, even if, not as the same person?
Anu Menon’s Waiting brings forth the pain and suffering that family members go through as they are required to answer the critical question of life and its continuance. What should you do when you are faced with these ethical questions of life?
Who decides?
In dramatic contrast to the film, the Ministry of Health, Government of India in its draft of Terminally Ill Patients (Protection of Patients and Medical Practitioners) Bill 2016 – on which it has invited comments and opinion – treats it as only a question of: Who decides? Who is to decide when the plug should be pulled? Is it the person, the family, the doctor or the Court?
When does the question of ending life become moot? What is a terminal illness? According to the proposed law, it is that “illness, injury, or degeneration of physical or mental condition which causes extreme pain and suffering” and which, “according to reasonable medical opinion, will inevitably cause untimely death”.
In the entire definition, the only condition which can be objectively determined is injury, as there is a fair modicum of subjective judgment involved in arriving at a diagnosis of illness, or a finding of degeneration. Whether pain and suffering are extreme or not would depend upon the pain threshold of the person making the decision, which is generally not the patient but others who know or don’t know the patient. And the facing of this pain and suffering is to be considered unacceptable, when reasonable – and not when expert medical opinion finds that an untimely death is inevitable.
A “reasonable” opinion is operating on probabilities and hence can be wrong. The second kind of terminal illness addressed by the statute does not even seek a medical opinion to diagnose its existence, because that is defined as a persistent and inevitable vegetative condition in which no meaningful existence of life is possible. Once again, one needs to ask the critical question: Meaningless, according to whom?
Difficult questions
In Waiting, the young wife, played by Kalki Koechlin, fears providing consent for a surgery which may make her exercise obsessed husband, Arjun Mathur, a wheelchair user. The other protagonist – in this case an aged husband, played by Naseeruddin Shah, who in turn is fighting for his own wife’s right to live – violently questions this approach. How, he asks, can Kalki’s character presume that her husband valued his physical movement above his life – and would prefer death over some restriction of movement?
The film understands that questions of life and death are difficult decisions – they need to be agonised over.The enormity of the decision needs to be understood. This agonising, this sense of loss, the need to ensure that there is no error of judgment is absent from the Draft Bill.
Providing treatment
In direct opposition to the film, the Draft Bill views the action of seeking death devoid of love and concern. It is a duty which can, seemingly, be performed alike by friend or stranger. The Bill permits any near relative, or friend, or guardian, or medical practitioner, or para-medical staff or management of hospital – or any other – to move the High Court asking for treatment to be stopped for any incompetent person or any competent person who has not taken an informed decision. In effect just about anybody can ask for anyone’s treatment to be stopped. A “competent person” is one who is not incompetent. And persons are incompetent if they lack the ability to understand, retain, and process information provided to them to arrive at an informed decision and communicate it.
This proposed legislation on passive euthanasia is most blasé about death. It allows just anyone to seek it – for anyone. Yes, at some places, medical practitioners need to intervene – at others, judges of the High Court need to provide their imprimatur. But as per the Draft Bill, no one need worry about liability, as it indemnifies all those who are involved in the decision of obtaining stoppage of treatment. And so sworn is the legislation to the ceasing of life that it even indemnifies those who deign to provide palliative care to patients between the pulling of the plug and the actual death. Ostensibly, the legislation is being proposed to allow passive euthanasia in order to ease needless pain and suffering borne by patients. With such an objective, palliative care needed to be a duty not a permission of the law.
Yes, the speech of law cannot have the emotion, compassion or concern of the arts but then is it required to be callous, indifferent and cold? Particularly in a country where organ harvesting has been done without so much as by your leave, where persons with disabilities are striving hard to prevent the able-ist majority from determining the meaning and value of their lives. Should we brook such a blithe attitude towards death and dying?
After all, the Supreme Court of India had asked for the recognition of the right to health and treatment in very many more rulings, before it was suggested in the case of Aruna Shanbaug that a law on passive euthanasia may be enacted.
Yes, we should learn to let go when a loved one needs to leave; but should holding of hands not precede the opening of the palm? Should a legislation on the right to universal and equitable health care not precede a statute to cease treatment with its large scale need for medical and legal personnel?
