Here's why you should write a living will before it is too late
Posted by: Uma Shashikant on Mar 19, 2018, 08.38 PM IST
By Uma Shashikant
The Supreme Court’s judgment is something worth celebrating. I am all set to write my living will. Life is a celebration that needs to end, and to think that it won’t end with me lying on a bed in a hospital with tubes all over, is a great sense of relief. There will be many opinions, not just mine, but let’s have this conversation. It is a very important one to have.
This battle that we so glorify and fight in the hospitals is a futile one. Death is how it ends, and there is no fighting it. Why then should there be this struggle, as if every effort spent on keeping someone alive is so precious, above all else? Families ruin themselves to bankruptcy egged on by a combination of love, duty, devotion and guilt to prop up someone who would have preferred to go. That decision about going is complicated, and even more so in the modern world of medicine, when treatments are curated to keep the heart ticking even if all else is dead and gone. No one, including the doctor, is willing to let go.
My mother-in-law lay in bed, immobilised by a knee replacement surgery that went wrong. We all loved and cared for her as she was an inspiration to us. I shared a special bond with her, and she spent most of her last days talking and reminiscing. She told me that taking care of her made all of us look and feel like angels, but that did not make a difference to how she felt about herself. She told me how terrible she felt about not being able to walk and cook the delicious meals she once made; she told me how horrible and invasive it felt to be bathed and cared for by a stranger; she told me how it destroyed her spirit to know that so much money was being spent on someone who preached thrift through her life.
When the time came to make a decision about her failing kidneys, she was adamant about not opting for dialysis. She told the doctor that she won’t sign the consent form for the procedure. She lived as long as her kidneys lived.
In our righteousness to care for the elderly, we fail to take into account their preferences. What would we want when we age? What would matter the most to us? We would like to be able to talk to, interact and remain in touch with friends and family. Being at home will give us that connect. To die in a hospital among strangers frightens most of us. We would like to be mentally aware and be able to make our decisions. We would not like to suffer in pain. We would like our own meals. Our families will be too distraught to make decisions on our behalf, to let everything else go and focus on these basic needs. That is why we need a living will.
A living will lays down the rules for our life, and we would remain in charge of it, because the responsibility for the physical body is ours alone. In my living will, there would be no resuscitation if the heart failed. There would no ventilator or artificial breathing device. There would be no dialysis. No feeding through a tube. If any illnesses required extensive support of machinery to keep me alive, I will not have any of it. Instead I would invest in keeping myself comfortable, perhaps with medication that helps me manage pain. I would choose hospice and palliative care over aggressive treatment at hospitals.
To my mind, the dignity of life is lost when independence and purpose is lost. Life is not about the pursuit of happiness alone. We all struggle through various odds and the sense of purpose that drives us is what defines us. If there is a slow and sure loss of that purpose, it is important to recognize that merely staying alive can become burdensome. We are not advocating any active ending of life. The Supreme Court is only talking about passive euthanasia and that is why it is sensible. It is not a decision one is emotionally or physically capable of taking after one falls ill. Writing a living will is to take charge of how we will go, when we are in a stable state of mind to think about such decisions calmly.
The dilemma and fear about the unknown future, the unpleasantness in talking about death, and the unwillingness to be rational about these decisions are problems we will all face. A living will makes the ground rules. It makes the choice that a passive palliative treatment is preferable to an aggressive intrusive treatment. It draws the line about artificial support to stay alive. It need not define the desired action in terms of money, but by defining what should not be done, it will save millions of rupees from being wasted to prolong a vegetative living condition.
These discussions run into the danger of being overtaken by emotions and sentiments. There is the argument about children’s duty towards parents. One hears so many heart wrenching stories of children living thousands of miles away, torn between their families and careers on one side and aging parents on the other. The burden of loneliness is a curse we all carry and it is cruel to burden the children with the responsibility of returning to us at our will, since our heart wishes for them to be near us. We cared for them and they now have to care for their children. That cycle of caring simply moves forward, let us not force it to come back to us.
As one reads about old age and diseases, one is struck by the overwhelming risk of falls and fractures. The loss of bone density and gait, the reduction of muscular strength and the slow reaction time due to failing eyesight and hearing, are real issues with aging. There was immense wisdom in offering the walking stick as the retirement gift in the olden days. Somehow that useful contraption has gone out of vogue. The modern version is so ugly to look at. I have decided that once I hit 60, I will begin to carry a walking stick, an elegant wooden one at that. It would tell me that I am in charge, and in the unknown eventuality of hitting the hospital bed, my family will exactly know what my preferences are.
Author is Chairperson, Centre for Investment Education and Learning.
Disclaimer: The opinions expressed in this column are that of the writer. The facts and opinions expressed here do not reflect the views of www.economictimes.com.
This article appeared in Economic Times dated Mar 19, 2018, 08.38 PM IST