“There’s an elephant in the room.
It is large and squatting, so it is hard to get around it.
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Yet we squeeze by with ‘How are you,’ and ‘I am fine,’ and a thousand other forms of trivial chatter. We talk about the weather. We talk about work.
We talk about everything else except the elephant in the room.”
(Terry Kettering)
The Karnataka government has acted, laudably, on the Supreme Court judgment on withholding and withdrawing artificial life support in the face of futility of treatment. This move to add humaneness and dignity to end-of-life care is a model for other state governments to emulate. Whether we choose to think about it or not, all of us will have to face death some day. Sudden deaths account for 10-15 per cent of all deaths. That leaves an 85 per cent chance that we will have some time for preparation, during which we can make sure that we have as much physical well-being as possible, that our affairs are in order and we can leave saying, “My day was good, let night fall. You will find the fields ploughed, the house clean, the table set and everything in its place.” (Paulo Coelho)
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If you choose not to think about death, you had better leave this country. India is no place to die in, unless you prepare yourselves. As the 2015 Quality of Death Index by The Economist found, it is among the worst countries to die in. We got to this position possibly because the nuclearisation of families made us unfamiliar with death. Today’s generation has grown up without seeing someone dying, and people find themselves ill-prepared to view death as the inevitable end to one’s life. As the Lancet commission on “The Value of Death” pointed out in 2022, we are death-illiterate today.
Though the problem is global, we are much worse off in India than most of the world. A 2019 study looking at European Union countries found that only 10.3 per cent of people admitted to the ICU die on artificial life support systems at the stage of futility of treatment. In a comparable situation in India, 70 per cent die lonely deaths on life support systems with their dying process stretched out over weeks, a tube in every orifice, most likely with arms and legs tied up, with excruciating physical, social, emotional and spiritual anguish.
Such incarceration and torture of dying people in ICUs (with the consequent generational poverty) is the elephant in the healthcare room that we continue to ignore. This trend towards death in ICUs happened just around the turn of the century. And in the 25 years since then, there seems to be social acceptance of the phenomenon. This acceptance seems to be so deep as to cause religious objections, too, because withdrawal of artificial life support measures is seen as euthanasia. It is unfortunate that the Supreme Court used the phrase “passive euthanasia” to describe withdrawal of artificial life support. As the bioethics unit of the Indian Council of Medical Research points out, allowing natural death cannot be viewed as euthanasia. But such misunderstandings are common and can be overcome only with sustained advocacy.
Considering that the healthcare system moved in the wrong direction, an obvious solution would have been rational legislation by Parliament. Indeed, in 2016, the Government of India published a draft law online and asked for comments from the public. This could have prevented the obvious violation of the right of the citizen to die with dignity. But unfortunately, the matter was dropped and no legislation materialised. Thankfully, the Supreme Court offered a solution in its 2023 judgment.
This judgment lays emphasis on human life and dignity and by clarifying that the individual’s right to life includes the right to death with dignity. It states that when the individual does not have reasonable chances of returning to a reasonable quality of life, it is necessary to withhold or withdraw artificial life support systems and instead provide palliative care. Most importantly, the court emphasises one’s right to make decisions for oneself, so long as one is over 18 and mentally competent to make such decisions. It validates the advanced medical directive (AMD), commonly called the “living will”. One’s wish to get palliative care and to be with loved ones at the end of life can now be laid out in the form of an AMD. One can name proxies (healthcare power of attorney) to make decisions on one’s behalf in the eventuality of being no longer competent to take decisions. Such a proxy can be a close family member or a friend. And once such a living will is countersigned by a gazetted officer (or a notary), it becomes legally valid.
To prevent misuse of the provision for withdrawing life support, the court put in processes that may be too complicated unless we prepare ourselves. The court’s suggestion to have a central repository for storing AMDs may take a long time to materialise. In the meantime, a copy of the duly signed and witnessed AMD should be available in the medical records and with the designated proxies. The AMD should also be shared with the next of kin and any other decision makers in the family. Whatever the document may say, doctors are unlikely to act on it unless the family concurs.
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The court has also asked for a primary medical board (PMB) and a secondary medical board (SMB) to concur with any decision to withdraw life support. The SMB would need a nominee of the district medical officer. These processes will delay action unless panels of doctors are prepared in advance.
A sample copy of an AMD and information on the Supreme Court judgment prepared by Vidhi Centre for Legal Policy can be found at https://palliumindia.org/2024/06/living-will-and-attorney-authorisation. The form available there is editable and can be customised according to individual preferences and choices.
Rajagopal is chairman emeritus of Pallium India and author of Walk with the Weary
