Dividing Lines: A case for dying

One of the most fascinating things about the 21st century is what I call the return of the body to the centrality of things. The body has become the site for all the major dramas — philosophical, political and ethical. Torture victims, refugees, raped women, undernourished children all reflect the stories of the body in our age. Two other issues that will haunt us and, in fact, test the future of our society is old age and euthanasia.

The HelpAge India report has already emphasised that a large majority of old people go to sleep hungry and are frequently abused. Now the courts wish to meditate on mercy killing. What I want to emphasise is that such a debate cannot be a mere question of law but that such a law has to be the culmination of a society’s reflection on religion, old age, suffering, technology, choice, freedom and responsibility.One has to begin personally. By the time one is 50, the world of people around you shrinks. People die, often painfully.
The long process of dying, the agony of suffering often re-writes, re-inscribes the self you once knew. Sitting at the bedside of one you love, you watch as the person fades, withers into a ball of pain or deteriorates to being a “vegetable” unable to control even basic functions — the patient is desperately helpless and yet desperate not to be helpless. S/he wants to salvage some sense of bodily dignity, some autonomy of the self.

After a while even that sense of struggle is gone and all one sees is a sepulchral self of the person you once knew and loved. Memories get scarred as a person dies in inches in front of you. One starts wishing for quick death, for some sense of relief. You wish the person was dead and think of how you’d like to die, with dignity.

I remember sitting outside a hospital with my father while he waited on a friend, stunned by what a few months of cancer had done to his friends’ stomach. It was unbearable to watch. While walking out my father said to me, “Promise me one thing I cannot ask anyone else — you must switch off the machine if that ever happens to me”. Stupefied, I agreed. I do not know whether I could have actually done it but this much I do know, at that moment I felt it was the right thing to do. It is not death that bothers one, but the manner of dying.

I want to emphasise the deeply personal nature of such decisions before we begin to talk of the science of euthanasia. The Nazi history of “social work programme” haunts us as disabled people, dubbed as “useless eaters”, were the first people to be sent to the camps. Jews and gypsies followed much later. Such an idea of euthanasia emphasises technology and organisation. It is impersonal, rationalised and yet it claims to be an objective solution.

One senses this on a lesser scale in India when families quietly eliminate the old and suffering not out of compassion but out of greed for property. One thing is clear, such choices cannot be bilateral, restricted to the suffering individual and the family. It requires intermediaries, including the state and the doctor and maybe even a priest or ethicist as expert.

In fact, the question of assisted dying emerges mid-way between two events discussed. The euthanasia debate raises a whole range of rituals, choices and issues. What is usually discussed in Europe is a form of assisted dying. The rules and rituals are minute and specific. Imagine a person with terminal illness who has six months to die, imagine also s/he is in clear control, and able to take decisions.

Even then the doctor has to be convinced that the diagnosis is correct and the person has the capacity to make the decision. Voluntariness and information has to be clear. Even then the patient has to be informed about alternative choices.

Put this way, it sounds clear. The onus is on the patient. However, the situation get muddier when the patient is in coma and autonomy and decision-making seem a distant dream. A long period of illness is an excruciating period of waiting. The patient is plugged into a set of machines that keeps him alive, barely alive. Beyond the pain, there is the cost of keeping him alive.

Doctors warn even rich patients that a long illness can eat into any fortune. Most families would sell land, gold, houses to keep a beloved alive, hoping against hope for a miracle. Euthanasia or even assisted dying is thus always a muddy affair, where those dying are haunted by pain and indignity and the living are haunted by “what if, what if the person recovers”. A law that examines muddy solutions should take its time.

Both a “yes” and a “no” haunt one and somewhere law has to have the imagination to realise it can never be the last word in dramas like this. Such events need more storytelling, more reflection, more literacy about suffering and technology before we can dream of a law about such decisions.

 

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