The last couple of weeks has seen a couple of friends go through unimaginable trauma. Can you imagine helplessly watching your parent slip away bit by bit? One would think what a terrible thing, there can be nothing worse than going through this. But there is! What if the decision of continuing further aggressive medication and lifesaving treatment (albeit with highly degraded quality of life) or letting your loved one go with basic treatment rests with you? Suddenly the situation is many times worse!
Huge dilemma, right? It is natural to wonder what the sick person would have wanted in such a situation. Why then, is it so difficult to have a conversation about death and disease with our loved ones? Somehow our culture forbids us from talking about these unpleasant situations. Even if you broach the topic, you are likely to the shooed away saying “yeh kya apshakun bol rahe ho?”. It is almost as if you are inviting death and disease just by talking about it.
A small minority does think of what happens to their material wealth post death and manages to make a will. While this is a very important step, and everyone must do so, is it not our responsibility to ease the guilt and emotional trauma for our loved ones? All one needs to do is to have a conversation on what you would like them to do in case you are to be put on life support or given aggressive treatment which will reduce the quality of life.
When you are sick, they may choose not to follow your wishes. If they do, they will live guilt-free that this is something you would have wanted for yourself had you had your mental faculties intact to decide. As against not knowing and doubting if they should pursue all means possible to keep you alive and living with the guilt of ‘not trying enough’ if they choose to relieve you of your suffering.
While we are on this topic, it would be good to dwell upon a document called “living will”. A living will is a document that sets out a patient’s wishes regarding how they want to be treated if they are seriously ill. It allows a person the right to die with dignity.
In March 2018, the Supreme Court of India passed a landmark judgement, where it recognised that a terminally ill patient or a person in a persistent vegetative state has the right to die with dignity, and to do this the person will have to have executed a living will.
The difference between having a conversation with your loved ones on what you would like them to do if you are seriously ill and have no scope of recovery and any treatment that would prolong your life is likely to compromise heavily on the quality of life versus making a living will is stark. In the first case, all that the loved ones can do is decide not to pursue aggressive treatment and let time take its course. Whereas in the case of a living will, subject to a lot of conditions, including having a board of doctors granting permission, among others, it is possible to end one’s life immediately without any suffering.
The concept of a living will is new to India, and while being a step in the right direction, it remains to be seen how it practically pans out. It is for you to evaluate whether it makes sense or not to go for a living will. However, having the crucial conversation with your immediate family (spouse, children, siblings, parents) is non-negotiable. Let’s put aside our inhibitions to do just that, this week.
Image Credit: Gerd Altmann, Pixabay
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