T K Arun
India needs a legal basis for individuals to determine how to handle their end of life
India needs a law to give force to advance medical directives, in particular, to the instruction, do not resuscitate (DNR), to protect the dignity of those transiting from life to death and eliminate avoidable trauma for their loved ones. The moral and ethical factors involved are fundamental.
They must be addressed with all seriousness, from a philosophical basis that is grounded in India’s ethos and modern rationality, rather than the remains of 19th-century English law and its underlying vision of an all-pervasive divine will, which alone can determine when an animate being turns into a lifeless corpse, past hurdles posed by modern medical technology. A DNR directive is issued by a doctor on the basis of an individual’s clear instruction issued when he or she is in full possession of all faculties, ideally with clarity on the context in which it is to be applied and with the knowledge of others, some at least of whom qualify as medical proxies.
Die with Dignity
An atheist who sees life as the totality of chemical processes within the body, particularly, the brain, as well as a believer in the existence of souls that migrate from body to body in the manner in which a living person changes clothes can both agree that preserving human dignity and integrity of the minimum set of faculties that set a human being apart from a potato spud is more important than extending life, defined in purely technical, medical terms, for a few more hours or days.
Age and disease degrade, slowly but nonetheless surely, people who love and are loved, command their offspring and their spouses, apart from respect, laugh and amuse, tell tall tales and tales from family lore and the land’s myths, hold families and clans together and give a sense of belonging even to multi-ethnic, multicultural offshoots in faraway lands.
They lose their memory, even if they retain brief intervals of lucidity. Their bodies confuse the larynx and the pharynx. Food goes down the wrong way. They fall and lose mobility. They ail, often with grace, battling bedsores and brain fog. They bear the indignity of losing control over their sphincters, of adult diapers and caregivers with access to body parts that no longer qualify as private.
The lucky ones enter terminal oblivion soon. Some linger on and enter a stage of decline from which there is no retreat or retrieval. How long this stage lasts is not for them to decide, but for doctors and hospitals and the family members who look after them.
Children feel obliged to shift their parents to the hospital. Hospitals then deploy the latest tools of medical technology at their disposal to keep the bodies entrusted to them technically alive. Those who were the embodiments of love and affection, stores of practical wisdom and moral judgement, of comfort and of withering criticism, lie as lumps of flesh, sans agency or consciousness, a rasping, heaving breath the only tangible sign of life. Do they deserve this misery?
Legal Protection
Even when the failing body is kept at home, with an assortment of tubes pouring in nutrition and medication, and oxygen masks pushing ebbing life back into the body, the end is not easy. Moral quandaries over what should be done, the certitudes of community crones whose sole job is a forensic examination of people’s conduct for deviations from tradition, the angst of faraway relatives who want to make up for their inability to be of any practical assistance with a plenitude of advice, the timidity of doctors to press the medically advisable over the socially acceptable, all combine to extend the misery of the dying beyond what is required. Some of us, by good fortune, are spared this trauma.
The solution lies in giving legal sanctity to advance medical directives, including, but not conned too, DNR. DNR applies, strictly speaking, to cardiac or respiratory arrest. There could be other instructions on treatment at the end of life. This would allow the individual to be in charge of the decision on the right course of action in a given medical scenario.
The scientific temper that the Constitution valorizes demands a rational approach to death. That validates a decision to not accept treatment in a situation of no medically viable hope. A long tradition of individuals deciding to give up the life of their own choice — some practitioners of Jainism still stick to it — converges with, rather than contradicts, the rational choice.
Of course, medical viability or otherwise is the crucial decision here. The evidence for a particular conclusion must be recorded by the attending doctor, verified by fellow professionals and close relatives, and must be available for later examination. This must be provided for in the law, to prevent advanced medical directives from turning to means of legal murder.
Sure, hospitals would be dead against a law that would allow individuals to deprive hospitals of a major source of revenue. Some objectors are bound to crop up, spouting religion and divine rectitude. But respect for human dignity and individual autonomy demands enactment of a law on the lines of America’s Patient Self-Determination Act.
About the Author :
T K Arun, Consulting Editor, The Economic Times, New Delhi
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