GREETINGS Union Health Minister J P Nadda,
We seem destined, your ministry and I, to be working in conjunction for more than a decade now for the benefit of Indians in matters of health. Credit to the government, especially to the bureaucrats in the Union Ministry of Health and Family Welfare, for bringing about far-reaching changes—be it by banning commercial surrogacy; by stopping young wom-en’s bodies from being hyper-stimulated with chemical steroids to be medically mined for oocytes/eggs that are being sold in the national and international markets; or by regulating exploitative IVF (in vitro fertilisation) and controlling 3pr (third-party reproduction) in IVF where sperm was being commercially sold and even switched—without the knowledge of the intending parents—to “improve” the average 75 per cent failure rate in artificial human reproduction.
Post the landmark passive euthanasia judgement-law in 2011, laid down by the two Supreme Court judges in the case of Aruna Ramchandra Shan-baug v Union of India & Others, we worked together to decriminalise “attempt to commit suicide” through the Mental Healthcare Act, 2017. This I write with some satisfaction, because India is among the very few countries to add “advance directives” for mental health patients through this Parliament-passed law. (Western nations like Canada are still struggling to frame such contours on individual autonomy.) The “advance directives” for physical health came later, when in 2018, five judges upheld the 2011 passive euthanasia judgement-law, expanded upon it and permitted the writing of advance directives for irreversible physical illnesses. In 2023, the Supreme Court simplified the procedure of registering advance directives. Last year, the Union government informed the Supreme Court that it did not intend to pass a law through Parliament on passive euthanasia; therefore the judgement-laws in 2011 and 2018—which came because of a woman who has received no justice at all, Aruna Shanbaug—stand as “law of the land”.
Glad that’s firmly out of the way. We know from past experience, don’t we, of the Sisypheanness of this process. Some examples: after the Aruna Shanbaug passive euthanasia judgement-law was laid down in 2011, public comments were sought on the framing of it as a law through Parliament. The draft had some baffling clauses and the ministry sensibly junked it. In another attempt, I was the only non-doctor on a committee, the conjunctive tissue between irreversibly-ill patients with no voice of their own and what was hoped would reach Parliament. Mercifully that committee, pompously titled “Enabling Legislation To Regulate ‘Mercy Killing’ or ‘Euthanasia’ in India”, self-euthanised. Passive euthanasia is when death has already set in—neither the best doctors nor more advanced medical procedures can change this bald biological and scientific fact right there, on that bed, in the form of that patient struggling to find a shred of dignity in their debilitation. It’s certainly not sanctimonious “mercy killing”.
It seems like yesterday once again, this heavy-handedness. It’s as if so much public awareness and legal literacy has never happened. Which is why I write to you Minister Nadda; public comment has been sought on the “Guidelines for withdrawal of Life Support” for one month on this six-page undated upload. One wonders if non-medicos were part of the panel that drew up these guidelines, or a member of the public, a woman in an unrelated profession like a teacher or principal, to point out practicalities.
Perhaps that is why the best-interest of the irreversibly-ill patient is starkly, glaringly absent. No ill, literally, is wished up-on anyone; but for the moment let’s put ourselves—you, me, other ministers in the Union cabinet—upon individual deathbeds. So, there we are, wanting and waiting to die. Our bodies can no longer bravely cope with the crippling challenges of one or more irreversible illnesses. All we want is that our near and dear ones no longer bear any burden or guilt; if we have expressed our desire to donate our body-parts, we want it to be done as soon as we are declared legally dead. Now, is any of this possible when these guidelines tie up our final exit in so much red tape, with such impossibly expandable timelines to suit the convenience of all sorts of strangers who may well be on holiday? Please look at what has been titled as “accurate documentation” on page 4 of the draft guidelines, which are supposed to be the “pathway” to withdraw life support. Imagine our spouse, adult-child or aged sibling trying to negotiate this ostensible pathway (see ‘Riddled with red tape’, p54). See the potholes, the stumbling blocks?
There are also some glaring gaps in these draft guidelines that need to be addressed:
The assumption that every single patient with an irreversible illness is going to die in a very specific way and in a very specific place, the ICU.
In the definition of “terminal illness”, include persistent vegetative state (PVS). PVS was first recognised legally in the Aruna Shanbaug passive euthanasia judgement-law as a medico-legal condition. It is due to this judgement-law that putting anyone in PVS was entered as a crime in the strengthened anti-rape law post the Nirbhaya case.
In the definition of “withdrawal” and thereafter, replace the word “surrogate” with “competent authority”. The term “surrogate” has another definition under the Surrogacy (Regulation) Act, 2021.
In “withdrawal”, there is also an overriding of patient rights, especially if an “advance directive” clearly states that the patient will not want any intervention, including, for example, a kidney transplant. The conditions for withdrawal cannot insist that all patients with irreversible illnesses be necessarily fully brain-stem dead or in complete coma. Amend the text from “The following conditions must apply” to “The following conditions may apply”.
The section “withholding” incorrectly assumes the “same above three conditions” under “withdrawal”, when there are four.
The list of terms under the “Definitions” sections must include “tapering”. Aruna Shanbaug was kept alive with mashed feed pushed down her throat, and later with liquid feed pumped into her through a tube. While passive euthanasia became a law through her, she was denied it because no one wanted to take the responsibility of tapering her feed. This is a recognised, internationally accepted practice for patients who want to die with dignity, in which feed is tapered down over the course of a fortnight, added with some palliatives and some morphine. It is not a case of “starving to death”, because death has already set in and a wasting body is being forcefully kept alive by those who do not want to accept accountability.
Accordingly, in “withholding” amend the definition to say, “A considered decision in a patient’s best interests, to not start or continue a life supporting measure in a terminally ill patient, that is unlikely to benefit the patient and is likely to harm in terms of suffering and loss of dignity.” Common sense suggests that food is a life-supporting measure.
Slash the red tape. Creating so many primary and secondary and hospital oversight boards is resulting in the actual patient getting lost. Replace these with three doctors: first, the treating doctor who is the specialist; second, the head of the hospital/nursing home/healthcare centre (or the doctor holding the license to run that establishment), or the family doctor if the patient is at home; and third, an independent doctor who is not necessarily directly connected to the patient but is a licensed practitioner. This is enough for an ethics oversight given that there are laws in place, the medical conditions are evident, the patient may have an advance directive, and the near and dear ones are in agreement. Get a standardised sign-off from the patient if possible, the near and dear ones and one doctor. Any doctor not in favour of passive euthanasia should state their position at the onset so they are not considered in the final process, when time is of the essence.
As is dying with dignity.
(Pinki Virani is author of Aruna’s Story, Once Was Bombay, Bitter Chocolate, Deaf Heaven and Politics of the Womb: The Perils of IVF & Surrogacy)
This was first published in the 16-31 October, 2024 print edition of Down To Earth