My father would have turned one hundred years old on November 17, 2020, had he been alive. But he would have been distressed at not being able to swing a cricket bat or wield a tennis racquet, his favourite sporting pastimes, as his illness had left him bedridden. “The spirit is willing but the body is weak,” he would say, as he grew older and feebler in the years past his 80th birthday and he finally called it a day when he was 84 years old, too tired to stay alive and too weak to meet and greet people. At his request, he was moved home from the hospital, where he breathed his last peacefully, with family by his side.
And so, we must all say the final goodbye one day, and our only hope is that the end comes peacefully, without too much pain and without putting others to trouble. Of course, this is not entirely in our hands, but we can wish for the best kind of ending. Moreover, we have no way of knowing whether we will see the end coming and be able to say goodbye coherently. Death may well sneak up on us, and we may exit, unaware of the final curtain call.
Meanwhile, why not leave a living will? Technology has made it possible to postpone physical death and keep one’s body alive with life support systems, almost indefinitely, if one or one’s family could afford to do so financially and if there are emotional reasons why close family refuses to let go. But there is a time to live and a time to go, and it is better to leave with grace than to cling on. This suggestion applies more to next-of-kin who tend to resist facing the truth that their loving parent (or any other relative) is now ready to exit and get liberated from suffering -- for suffer one must if held back against one’s will and against the body’s capacity to sustain itself independently.
A living will refers to instructions to next-of-kin and medical caregivers as to what course of action ought to be taken in case the patient (author of the living will) is unable to decide due to being in a coma, is unconscious or on life support and is not in a position to communicate her choice regarding end-of-life medical care.
We pay a great deal of attention to making settlement deeds and wills that bequeath physical properties to our heirs. Properties may include land, built-up assets, investments like stocks and shares, mutual funds, bank accounts, jewellery, silverware, clothes and other such valuables. We tend to forget that the most valuable physical property we can ever possess is our biological body, the casement that houses us, and the organs that provide us with life and locomotion.
Spell out clearly
Should we not make it clear to caregivers as to what is to be done in the event of an emergency or in case a decision has to be taken about continuing with intensive care and life support? Should we not spell out our wishes concerning our most precious possession, our body, and specify if we would prefer palliative care that makes end-of-life more comforting and comfortable rather than be stuck with tubes and not be able to access loved ones?
In 2018, the Supreme Court of India passed a judgment that allows people to draw up living wills, and for the courts to accept them as legally valid, indicating that medical treatment could be discontinued if that is what the patient has specified in his living will, spelling out the conditions under which this wish is to be carried out. As per the Constitution of India, the right to die with dignity is a fundamental right, so this would include the right of a person to draw up a living will so that in case they suffer from a terminal illness or slip into an indefinite coma, caregivers can carry out what is specified in the will. The main petitioner was an advocacy group, Common Cause that appealed to the court to permit living wills as an option that will help people die with dignity.
Most people in India are not yet aware of what a living will entails or what it means. And for those who are aware, and who tried to get their living wills registered after the SC judgment, have faced hurdles, including the lower courts saying they are not equipped yet to deal with these new requirements. If this is the case with direct authors of living wills, there could be even more challenges when a future patient assigns medical power of attorney to a relative to take the end-of-life decision on her behalf.
Despite all these legal complications and lack of public awareness, and also the hesitancy by people to even broach the subject of impending serious illness or death, the fact remains that how we die – in case we have the choice – is an issue that needs to be viewed in all seriousness even when we are in good health and there is no harm in writing up a living will to make life easier for self, family members and the medical caregivers.
The author is a freelance writer, formerly an associate editor with The Times of India.