I opened the topic with my mother while I was reading Atul Gawande’s Being Mortal . “By the way”, I said, as though I were going to talk about the weather, “when I die, I want this-and-this to be done, and I don’t want that-and-that to be done.” Then I asked, “What about you?” Amma wasn’t offended. She told me easily about what she wanted done when her time came. It was not a long, detailed discussion; it was over in ten minutes. I said, “Okay” and went back to my book.
Later I said to my father, “By the way, I had this discussion with Amma. She said this-and-this. What about you?” He told me his preferences too, promptly enough. About funeral arrangements, about the material things that we leave behind, about end-of-life care, and other things.
Ever since I was introduced to the terms ‘palliative care’, ‘end-of-life care’ and so on, I had been reading about the importance of having conversations with our family about our wishes surrounding death. This was a conversation I had been postponing for long.
What struck me was how quickly the answers came. There wasn’t much reflection or thinking needed — clearly because the thinking had already been done, over and over many times. It just had not been discussed with me. Well, who knew which one of us would be the first to leave? That’s why I told them my wishes too. I am glad I had this conversation, because though I was aware of their ideas in general, there were some finer points that I had not thought of — which they both had obviously considered down to the last detail.
Why is it so difficult to broach the subject? We all know that death would eventually come to each one of us. In fact, that is the only certainty we have about our lives. We just don’t know how and when. Some people consider it superstitious to talk about death, as though we would be ‘inviting trouble’ or ‘tempting Fate’. For others, it is difficult to conceive of the death of our loved ones. Talking about it to their face would be like saying “you would die one day”. It is not easy to do that. But in my case, it was not awkward at all — contrary to what I had feared. It was almost as though my parents were relieved I had asked.
“If my life is beyond saving,” my father said, “let me go – don’t let them connect me unnecessarily to ventilators and such.” My mother had also expressed this wish, though not as clearly as he did. The very notion of being hooked to tubes and wires was abhorrent and, dare I say, terrifying.
Today we hear many stories of patients being attached to artificial life-support systems such as ventilators, even against their own wishes, by loving family members. The person we remember, the person we know, is no longer in that body — it is the machines that breathe and throb for them. But we refuse to accept that and to let them go. We gain nothing by it, and the dying continue to suffer in silence. The suffering is often compared to torture.
It is important to have that discussion with our loved ones; we may not get an opportunity later. At one juncture, some of us, as family members, may have to make some hard decisions. Distinguishing between necessary and unnecessary treatment is easier said than done. Is the treatment helping the patient? If not, at least let him/her not suffer unnecessarily. By withholding artificial support and giving only the treatment aimed at reducing pain, we’re not killing them. We’re merely allowing a natural death, because it is time to go. Withdrawing (or withholding) life support is not euthanasia. Let us not confuse between the two.
As important as it is to discuss with our family members about their wishes at the end of life, it is also crucial to ask ourselves what we ourselves want. Do we want to endure the agony of being forcibly chained to this world? I remember an illustration I had come across in The New York Times, along with an article on the subject. A man is connected to life support systems, while his soul, depicted as a shadow trying to leave the body, finds itself tied by ropes to this world.
When we talk about a ‘good death’ or a ‘peaceful death’, we mean the dying person leaving this world with minimal suffering. At the end of life, we all will want to leave the world in a calm manner, and not kicking and screaming and crying — whether loudly or silently.
In India, there are no laws yet that protect the wishes of the dying. No wonder that in a recent survey by the Economic Intelligence Unit regarding the Quality of Death in different countries, India was ranked 67th among 80 countries. Apparently, India is among the worst 15 countries to die in.
However, in a step towards improving matters, the Ministry of Health and Family Welfare has prepared and announced a draft “Terminally Ill Patients (Protection of Patients and Medical Practitioners) Bill”. It is available on the website, http://mohfw.nic.in/, asking for feedback and comments from the public. Many of those who have taken a look at the draft have felt that there are several failings in this draft and that if it gets passed in its current form, it would only make the process more painful for those in their end of life. The last date for submitting comments was June 19.
This is something that could affect each one of us or the people we love, and as such it is important and needs to be talked about.
j.papaadi@gmail.com
