Let's talk about living and living wills'

Do you have the right to die with dignity? To decide in advance when to switch off machines that keep you alive, that prolong your suffering and financially ruin your loved ones, in case you are terminally ill or ever in a vegetative state? The Supreme Court is thinking about it.

The debate on euthanasia gave us a passive euthanasia law. Now we are debating the “living will” — where a person could leave instructions refusing life support in case of an irreversible terminal illness or a vegetative state. Arguing for the legalisation of a living will, Prashant Bhushan, on behalf of Common Cause, noted that the right to reject treatment flows from our right to life. The government, however, believes such a will “may be misused in the case of elderly people who are treated like a burden by many”. Both positions have their merits, and the court has reserved its verdict for now.

But the court has said the living will is “not postulated on the right to die but on the right to live, as the person is actually saying he wants to live only till he can without outside support”. And the court could frame guidelines for it, which should be executed only when a medical board affirms a person’s medical condition was incurable and irreversible. It mentioned a two-pronged test for the living will to take effect: “when the medical condition of the patient has become irreversible” and “when the prolongation of his life can be done only at the cost of pain and suffering...”

A proper debate on the “living will” can’t be limited to just medical treatment and our right to live. It needs to look at how we live, and why we fear the law can be abused — that elders may be hastened to an early death by their families, or that we may wish to choose death rather than a lingering half-life of abuse and neglect. It needs to explore what we as a society and as a nation can do about it.

First, the fear of abuse shouldn’t prevent us from making laws. We just need to guard against misuse. Every law can be abused. Laws prohibiting dowry are routinely misused — that doesn’t justify scrapping the law itself. And if we fear people would be wrongfully put to death by the misuse of a living will, we should scrap the death penalty (and I seriously hope we will), which often kills innocents who have been wrongly convicted.

Second, we do need to respect the right to live with dignity. A living will would certainly help. But we need much more. Abuse of the elderly is rampant in India, even as we tout our traditional respect for old people. India is home to over 100 million elders. Even though elder abuse is largely unreported in India, according to various surveys (by HelpAge India and others), half this population is abused. Which makes India the most gigantic bloc of elder abuse worldwide. This abuse can be physical, mental, emotional, sexual and financial. And the most widespread is one we don’t even acknowledge as abuse — neglect.

The vulnerability of the elderly is not only due to failing health, but due to social attitudes suggesting they don’t matter. Children, grandchildren and their spouses regularly maltreat parents and grandparents. And with social isolation and a misplaced sense of family pride, the elderly suffer in silence. Depending on their social status and access to money, elders are neglected, disrespected, ill-treated, denied food, denied medicines, beaten up, threatened and even thrown out of their own homes. They are abused at home by their families, in hospitals by caregivers and in public spaces by utter strangers. So the fear that a property-hungry family will misuse the living will and nudge their elders to an early departure is very real.

To prevent that we must raise awareness and change social attitudes. We need supervision in hospitals and in homes for the elderly. We need to boost activities, social networks and clubs for seniors. Family situations need to be supervised too — perhaps by caregivers who visit the homes of the elderly, and assess, raise awareness or raise an alarm, if necessary? Cutting across class, we could be friends to elders in need. We could regularly visit the elderly and infirm in our neighbourhood, in our friends’ and family circles. Isolation and low self-worth allows abuse. As responsible citizens, we could try to stop that.

Third, a medical panel having the last word on execution of the “living will” isn’t foolproof. Medical panels almost always side with doctors — even when there is malpractice. We have no reason to trust their objectivity here. We have many dedicated and excellent doctors, but in general our medical profession is not in great shape. Apathy rules. Most medical institutions are either overcrowded and short on resources, or are money-making machines that shamelessly fleece patients and their families. Each of us knows of people who have been put through unnecessary procedures to make money, of brain-dead patients kept on ventilators, irreversibly comatose patients kept alive on machines, plunging their families deep into debt and financial ruin. Customarily, doctors hang together, so can we always trust medical panels to take ethical decisions on withdrawing medically-profitable life-support systems?

Fourth, a “living will” debate must give serious thought to universal medical care, to making life-saving care more affordable for all, to improving public healthcare.

Finally, we must never forget that the patient — however old, infirm or debilitated — is a human being, whose right to choose a dignified life before an inevitable death must not be overruled by logistical convenience.

Maybe living wills can never be totally safe. In an increasingly self-absorbed society, the vulnerable can be led to believe death would be preferable to the miserable, lonely lives they lead. To counter that, we must reach into our social fabric and touch the cords that connect us, that add a little humanity to our rushed and aspirational lives, and lend a hand to the infirm. We must reinforce our social support systems, with or without the government. Because to help prevent misuse of living wills, we must strengthen each other’s will to live.