Whose life is it anyway?

In the end, the things that matter most are: How well did you live? How well did you love? And how well did you let go? - Buddha

Aruna Shanbaug’s traumatic life (if you can indeed call it life!) and end last month sparked off something that I’d been wanting to write about for some time. No, not euthanasia; it is how I think, we as a society, should be viewing ageing and mortality.

Today, there are innumerable self-help books, online counsellors and brick-and-mortar gurus who help us counter the complex conundrums posed by a fast evolving city life. On the contrary, there is very limited thought or literature on the subject of our mortality – on how we should prepare for our eventual exit from this world. How many of these guides and gurus will also tell you to accept the inevitable and be at peace with it.

I’m sure we all want to live long and healthy lives, and I wish so too for everybody... but, let’s face it, like all organic matter, human body too is susceptible to ageing and degeneration; and death is a certainty, like nothing else in this world.

It is ironical that, we humans have big, big trouble accepting it!

Take the case of Aruna Shanbaug. A victim of brutal sexual violence, Aruna spent the last 42 years confined to a bed in Mumbai’s KEM hospital in a persistent vegetative state. In a superhuman gesture, the nurses of KEM took care of her lovingly for 40 long years, refusing to allow the hospital to evacuate Aruna.

Much as I respect the nurses’ noble service to Aruna, I wonder if Aruna would have really chosen to live such a life if she had been cognizant of her condition and had been able to communicate with her caretakers. I asked myself if I were Aruna, would I have chosen to prolong my traumatic existence for four-decades, bedridden, completely dependent on others even for maintaining my personal hygiene. The answer is a big NO! I think, I would have opted to pass on peacefully rather than live a life of indignity.

Unfortunately, in Aruna’s case, while the Supreme Court judgement allowing passive euthanasia (we have activist Pinki Virani to thank for this landmark judgement) could have facilitated withdrawal of her life support systems and nasal feed in 2011, the nurses tending to Aruna refused to let her go. With the result that Aruna suffered for another four years before her blessed end came finally in May 2015.

A classic example of misplaced human emotions, in my opinion, where Aruna’s nurses put their love for her and obligation towards her before her best interests.

Incidentally, the apex court allowed the Dean of KEM Hospital to have the final say on Aruna’s case, and the dean decided that it was in Aruna’s “best interests” to be fed and cared for on a daily basis, till nature took its course.

Here’s another case closer home. One of my aunts (father’s cousin) aged 75, passed away recently. She was diagnosed with kidney malfunction some three years back, when she was 72 years old. For three long years, her average middle class family spent lakhs of rupees on her treatment. Towards her last days, the family, with its limited financial resources, was spending something like Rs. 3000 per day for keeping her in the ICU, expenses it could ill afford. Her son and daughters, who had families and commitments of their own, had used up every possible source of funding till they were eventually pushed to selling their only ancestral home for her treatment. But my aunt’s aged body, already sagging under various other medical complications, didn’t respond to the intensive treatment and she passed away, leaving behind her children in a financial mess.

I’m not blaming my aunt, poor soul! She had no say in any of the critical decisions made relating to her treatment. Indeed, a strange thing about the modern medical system is that patients are often kept out of the decision-making process regarding their treatment, even when such treatment is prolonged and traumatic at times (as with cancer).

My aunt’s case is not unique. Many of us have been on the hot seat, sometime or the other, to make critical decisions on matters of life or death for our loved ones. These decisions are never easy. With modern medicine promising near immortality, thanks to extensive life-support systems, families are thrown into a dilemma over their duties to their dying kin. If they are unable to afford an expensive treatment for the patient, they fall victim to a sense of guilt that the system – including doctors, friends and other kith and kin – perpetuates.

It is okay for all of us to want to give our ageing parents, spouses or grandparents the best we can; but, we should also remember that making them undergo prolonged treatment and keeping them alive at a heavy price – be it the affordability of the treatment, or its effectiveness, or denying precious medical infrastructure to a more deserving, younger candidate with greater chances of survival – may not always be the best thing for them. And, remember, we are only postponing the inevitable, not eliminating it.

While doctors with their knowledge can show us how to keep people alive forever, it is up to the family to choose wisely. Sometimes, the greatest thing we can do for our ageing/dying kin is to simply let them go...

It is sad that faced with lopsided priorities set by the society, families often choose to invest in their irreparable past at the expense of their future.

A word of clarification here – I am not saying that people suffering from serious ailments should not be treated. On the contrary, we should leave no stone unturned to save a human life, provided the patient’s age is favourable and his/her medical condition is such that there is reasonable certainty of the person returning to a normal life. Else, our efforts in challenging man’s mortality would only help prolong the patient’s suffering.

Our ancestors had a more sensible view of life and its end. They had divided their lives into four stages, based on their age, with the stage that a man/woman steps into in his/her sunset years being ‘Vanaprastham’ – literally meaning ‘entry into the forest’. This was the stage when they let go of their material desires and possessions and set out on a spiritual quest. Much like birds that die of old age, they too sought to move out of their society to a secluded area, and prepared themselves to embrace their end.

In Tamil Nadu, when a person who has lived a long and fruitful life passes away, it is called “kalyana saavu”, meaning auspicious death. It is considered a welcome event and the deceased person’s soul is given a happy farewell to the nether world in a celebration of music, dance and flowers.

Of course, today’s society is infinitely more complex, and the concept of Vanaprastham or Ubasute (a similar practice supposedly prevalent in ancient Japan) is not an option any more, and would bring Forest authorities and Human Rights activists knocking at our doors.

But, there is hope for a maturing society. And that hope is called ‘living will’.

A living will is a legal document that expresses a person’s wishes regarding life-prolonging medical treatments. Several countries allow a competent adult to execute an advance directive as to whether he or she should or should not be given medical treatment when he or she is terminally ill and not in a position to take a medical decision.

In India, the living will is yet to receive legal sanctity. But, in July 2014, the NGO Common Cause, led by Prashant Bhushan, had submitted to the court demanding the right to execute a living will for those with chronic terminal diseases, stating their intent to refuse treatment and die.

I find this idea very appealing; at one stroke, it allows us greater control over our lives and ensures that we don’t become a burden to our society. But, till the concept of a living will becomes a reality, dignity in death will remain as transient as life is.

“Jisei – Japanese death poetry”

I pass, as all things do,
As dew on the grass.

     ...Kumazawa Banzan

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