Your Living Will
I published an earlier version at 6 AM on 25th Jan. At 7.30 AM, the newspaper carried on the front-page, news that the Supreme Court had given orders to simplify the procedure to execute a living will. Talk about timing. I have re-written parts of this piece to incorporate this new development. The audio / podcast remains unchanged.
At some point, we are all going to die. What matters is how you die and what happens to those around you after your death. It is important that you make sure that your death does not create bigger problems for your near and dear ones.
Most of us understand the importance of a will. It is executed when you die and makes it easier for your heirs to handle your wealth, hopefully amicably, without discord. It also makes it easier for them to manage your bank accounts, lockers, demat accounts, etc, which can be difficult without a will. You don’t really want your heirs to run from pillar to post because you forgot to put things down in writing.
The living will is different. It is executed when you are still alive, but not in a condition to give instructions about your treatment. It is created when you are in good mental health and executed when you are likely to die and/or want to die peacefully, even though you could be kept alive for a longer period of time artificially, hooked onto machines or drugs.
Medicine is inherently paternalistic, whether it is modern or traditional medicine. The doctor or healer, who you have placed your faith and trust in will typically dictate the terms of your treatment and rarely if ever, answer your questions and/or accept alternative forms of treatment that go against what they believe in.
This paternalism also extends both consciously and subconsciously to your right to die. As Hazel Biggs [1] says
...Founded upon respect for individual autonomy, this is a right that operates through the law of consent to protect patients from unfettered medical paternalism. Common law holds that patients with the capacity to give consent are also competent to refuse or withhold consent, even if a refusal may risk personal injury to health or even lead to premature death.
Our paternalism also extends to believing that such issues are not meant for India and Indians but are Western concepts that we may perhaps not be ready for, as many intellectuals and judges thought just a few years ago.
The right to die with dignity is not an alien Western concept. Jains have practiced “santhara” for many millennia, giving up food and water and letting the body waste away so that the soul attains a higher state of existence. However, “santhara” requires you to make the decision of not eating or drinking when you are in sound mind. The problem occurs when you are no longer in a condition to make decisions on your own. Where is the dignity in being kept alive and sentient, drugged by morphine and pain killers with all kinds of tubes attached to you?
However, it is not always that simple. My uncle, who was quite ahead of his times, almost two decades ago, wrote out a living will saying that he would not want any admission to a hospital or an intensive care unit, in case he became unconscious or was unable to make medical decisions on his own. His daughter, a doctor and I both said that we would take a call at that time and that he couldn’t really bind us indiscriminately.
As it happened, the first time he fell really sick was when he landed up with malaria and then became delirious. If we had implemented his living will, he might have died, but we placed him in a nursing home where he was given good care and he recovered and lived another few full years before he finally died one fine day at home, peacefully. It is important that the living will is executed only when a person is terminally ill or when there is absolutely no hope, not just in acute settings requiring intensive care, though to a non-doctor, this may also sound like medical paternalism. There are no easy answers in such situations.
On the other hand, a friend’s father, who landed up with severe respiratory infection and had no hope for survival, opted to go home in the few minutes that he was lucid and died peacefully without his life artificially prolonged. The friend faced a lot of criticism from other family members…if there had been a written living will, it would have saved them quite a bit of emotional trauma and self-doubt.
This is not an easy issue even at the best of times, but if you have written down your wishes, it allows your near and dear ones the ability to make decisions in your best interest without being assailed by unnecessary guilt for the rest of their lives, wondering if they had made the right decision or whether they could have done more to keep you alive.
In 2018, the Supreme Court in India allowed a living will/advanced directive to be implemented in case you as a patient wanted life-support withdrawn or perhaps not instituted in the first place, but were unable to communicate this. The process however was extremely cumbersome and till 2023 not a single case of successful execution of a living will had been recorded anywhere in the country. In Jan 2023, the Supreme Court simplified the procedure by replacing a judicial magistrate’s attestation with that of a notary or Gazetted officer, allowing it to be made part of the electronic health record of the patient and simplified the permissions to be obtained by the medical boards.
A living well template can be downloaded from this site [2].
You should write out a living will in the format given here and give a copy to your heirs so that they know what your wishes are. This template does not have a statement saying, “I would prefer not to be taken to the hospital, in case I have a terminal illness, or I am in a vegetative state, but at home”. You should add this…not going to the hospital is often the simplest way of managing the situation.
If you do not get this notarized, the will may not have legal standing, but it will help your heirs to make the right decisions that align with your wishes. Typically, it would mean taking you back home if you were near end of life, so that you die with your loved ones around you, or not instituting aggressive measures if you have been taken to a hospital, which today many doctors will agree to, if they realize the futility of the situation, or more importantly, not taking you to a hospital at all.
Active euthanasia, i.e. mercy killing, is not allowed in India and will not be implemented by any doctor. Passive euthanasia, i.e. letting someone die if they are dying anyway without additional props, except perhaps for morphine to ease the pain, anyway happens quite frequently without the law being invoked, as long as all stakeholders are on the same page. The living will gives added strength to the caregivers to be able to do this in the correct manner.
What does this mean for you and I?
Make a living will and give copies to your heirs and caregivers, mentioning what exactly you would like them to do if there is no hope of you living or recovering from your illness. If and when you are unable to make decisions about your health and life, it will give them a sense of what to do to ease your passage to a peaceful death without being wracked by guilt and self-doubt.
Footnotes