Lifestyle - How we die and what it costs

Subir Roy

The award-winning Japanese film Ballad of Narayama (1983) by Shohei Imamura tells a story too powerful to forget. A famine-prone mountain village controls its population and ensures survival by following a practice whereby anyone who lives to be 70 is taken up to the nearby Mount Narayama and left to starve and die. The protagonist does not want to do this to his mother (keeps saying till the end, “I have enough to look after you”) but she is determined as she knows her time has come. She wants to end her life with dignity, unlike the neighbour whose sons had to drag him to the mountain.

This story has critically shaped my idea of how to age and die. How to spend your last days is an intensely personal issue and every individual must have the right and ideally the means to make a choice. Modern science is giving us the technology to live longer and longer, and increasing incomes the means to do so. All societies want their citizens to live as long as they wish to and most families want the same for their elderly.

There is a global movement to legalise euthanasia, or mercy killing, for those suffering great pain incurably. Two countries — the Netherlands and Belgium — allow it. Switzerland does not prosecute someone assisting in euthanasia unless it is done for private gain. I have no doubt that euthanasia will eventually be widely allowed as the global population ages. But what about the days leading up to it? A huge part of a person’s lifetime healthcare expenditure is incurred in his last health episode. Even before I decide if I want to ask someone to end my life, can’t I decide if I can spare my family, society and economy the burden of what is mostly pointless medical expenditure?

The middle class in India is rapidly becoming better off and living longer. A burgeoning private healthcare industry is making it possible to do so, often at great cost to families. The industry’s expertise is growing rapidly but its ethics languish several steps behind. Result? I keep hearing innumerable stories and coming across startling instances among relatives of costly procedures and treatments undertaken on very old people, who thereby suffer enormous pain but gain little except perhaps a little longer life. The healthcare industry of course gains unequivocally. Their advice to the family who are then emotionally weak and vulnerable? The chances of success are even or low but we don’t rule it out. More glaring are instances of someone being kept on a life support system costing a daily fortune, the private hospital eventually pulling out the plug not on the basis of an independent medical determination but when the family says, we got no more money. The initial observation by the doctors? People do come out of coma.

Our eldest aunt’s husband became a living family legend when a few years ago all his children, grandchildren and a few great-grandchildren gathered to celebrate his hundredth birthday. The former highly successful lawyer’s mind was still clear and physique good enough for him to take a daily walk. Then a month later he had a stroke and lost mobility and speech. The doctors at the private hospital recommended and performed brain surgery, at great cost but to no purpose. After a month he was removed from intensive care to a general ward as the family said it had no more money to pay for intensive care. He died shortly thereafter.

On the other hand, my mother fell and dislocated her shoulder when she was 81. The senior consultant at the non-profit said, “I don’t recommend surgery at her age.” Instead, he prescribed some medication and a few very light exercises. The pain went but the usefulness of the right arm was very partially restored. Now my mother’s big regret is that, for a person who has all her life loved writing letters, her handwriting has become “horrible”. There is no clear distinction between for-profit and non-profits. Some non-profits behave like the former. On the other hand, there are consultants attached with for-profits who become family friends of their patients and render advice without seeking to maximise billing.

I love the north Indian hills and my dream is to eventually settle in Himachal’s Sangla valley, among the prettiest corners on earth. My wife laughs it off, saying I will never actually do it. The obvious question friends ask is, what happens when you need urgent high-quality medical care? My reply is, what does it matter if it all ends then. I will go to a big town for periodic checkups, take my medicines, follow the recommended regimen, have a GP around to deliver the basics and then take things as they come. Does anyone want to bid for my last few rupees in return for a service level agreement promising not years but a certain quality of life?

This is an intensely personal choice but I feel we have gone too far in wanting to extend our lives, no matter what the quality. When we are old, physically ill and emotionally weak, we don’t have the strength to tell our families, take me home, give me pain killers and let me spend my last few days in peace without invasive interventions that will only increase the pain and bring the family to the brink of financial ruin. So I want to join a campaign (it takes years to develop the right mindset) to live and die with dignity; put in place clear instructions on what I want done when I am unable to decide my own treatment — not just when to pull the plug (euthanasia) but when to say no to doubtful costly procedures and treatments.