When 78-year-old Dr Lopa Mehta tried to get a 'living will' in 2021, the judicial magistrate her family approached, refused to sign off on it. He said he was neither aware of such a provision nor had any advice on the matter.
In 2018, the Supreme Court of India passed an order allowing citizens to draft an advanced medical directive – also called 'living will – which is a legal document that lets one leave instructions regarding their choice to withhold medical care, specifically end-of-life care, if they aren't in a state to make decisions at the time.
Four years on, there has not been a single advanced medical directive successfully executed in the country — and it's not for lack of trying.
More recently, in an attempt to replace the 'cumbersome' procedure to procure a 'living will', the Supreme Court has agreed to modify the guidelines on the recommendation of the Indian Society of Critical Care Medicine (ISCCM) and the Union government. However, it isn't as simple as 'my body, my choice'.
This Is Not About Passive Euthanasia
Many critical care specialists The Quint spoke to emphasise that end-of-life care isn't about euthanasia – passive or active.
"We are not killing the patient, passively or actively. What we are doing is withholding lifesaving intervention only at a point when it is futile," explains Dr Sumit Ray, Head of Critical Care Medicine at Holy Family Hospital in Delhi.
According to Dr Ray, using the term 'passive euthanasia' to refer to end-of-life care in the context of India is a problem because of the negative spin it adds to the process. He says:
"End-of-life care is taking care of the patient to make sure they have a dignified death when they are at a point of no return."
Speaking to FIT, Dr RK Mani, an intensivist with over 20 years of experience, and one of the representatives of the Indian Society of Critical Care Medicine, agrees.
"There have been campaigns among intensive care specialists to humanise health care, and make it ethically more sensitive. This is based on the patient's right to autonomy and right to decide for one's self and privacy."Dr RK Mani, Member of Indian Society of Critical Care Medicine
Tangled in Red Tape and Fine Print
"The 2018 guidelines were problematic on two levels," says Shreya Shrivastava, a Senior Resident Fellow at the Vidhi Centre for Legal Policy that provided assistance to the petitioners in this case.
"One was at the level of the execution of the advanced medical directive, and two at the level of its implementation when you actually have to withhold life-sustaining treatment."Shreya Shrivastava, Senior Resident Fellow at the Vidhi Centre for Legal Policy
The process was that all district judges across India needed to designate a Judicial Magistrate First Class (JMFC) in their court for the execution of the living will. Then the person who wants to get the living will had to appear in person with two independent witnesses, and then get the approval of the JMFC.
This involves multiple visits to the court, and getting through levels of government officials who, at times, had no idea of the procedure.
Some terminally-ill and elderly patients who wanted their directive to be executed were so intimidated and exhausted by the process that they gave up trying, says Shrivastava.
"You may have a system, but if the players in the system have not been advised, and they don't have any guidelines, how will it work?" adds Dr Mani.
If you somehow do get the directive approved – there are so few of these that you could count them on your fingers – getting it administered when it counts is a whole other level of challenge with no winners yet.
What Happens When a Patient Is Beyond Revival
Once the treating physician determined that a patient was beyond revival, if the question of withholding or withdrawing life support comes up, the hospital would have to form a primary board to review the case (whether there is a directive in place or not), and this primary board must include experts from different disciplines with 20 years of experience each.
This was a difficult bar to meet for smaller hospitals that don't necessarily have experts from all specialities, especially those with that many years of experience.
"They hadn't specified what happens if they don't find people who fit the bill," says Shrivastava.
Furthermore, once the primary hospital medical board approves of the decision, they would counsel the family. Once a consensus is reached, they would then have to reach out to a collector who would form another secondary review board.
They then had to go to the JMFC who had to visit the patient and approve the decision. Only after that could the family and the doctors enforce the decision to withhold or withdraw treatment.
"This is completely impractical," says Shrivastava.
"If you take the example of a busy government hospital that face multiple deaths per day in the ICU, how do you expect them to go to a collector, and how do you expect a judicial magistrate to come and visit every time such a case comes up?"Shreya Shrivastava, Senior Resident Fellow at the Vidhi Centre for Legal Policy
Doctors Are Apprehensive Too
"There was also hardly any execution of the living will because of the inherent fear that you may be legally liable," says Dr Mani.
Dr Sumit Ray says in all his years of experience, there have been only two cases where patients had a living will drawn up, however, in both cases, they were not executed as directed.
"The problem is that the law was so complicated that even with that it is not easy to completely withhold or withdraw treatment."Dr Sumit Ray, Critical Care Specialist, Holy Family Hospital, Delhi
Dr Ray goes on to explain that despite a living will being in place, "we had to get the opinion of the family both the times."
He says, sometimes, despite the families and the doctors realising the futility of care and coming to a consensus to withhold or withdraw treatment, "the way the law was, the family had to go and get the permission of the magistrate, and nobody wanted to deal with the government on this."
In a situation like this, "we couldn't step back, but we may not have gone forward aggressively and escalated treatment. That's how we used to balance it out. It's a very complex and delicate situation," he adds.
"The fear was that there is no clear legal provision to protect them (the doctor) even when one takes an ethical decision (to withhold treatment)."Dr RK Mani, Member of the ISCCM
"This is why we went up and asked for clarification of the procedure, because otherwise it's unworkable. And an unworkable provision is like not having a provision," he says.
The ISCCM and Vidhi Centre for Legal Policy met with the Ministry of Health and drew up suggestions for new guidelines that did away with some of the red tape and simplified the process.
The New Guidelines: What's Changed?
Some key changes that make the whole process more functional are:
This primary board will now comprise of the treating physician, and two subject experts of that particular case with five years of experience each
A limit of a total of 48 hours for the decision has been added
The secondary board should have two subject experts, with five years of experience each, who are not part of the primary board (they may be from another hospital), and one doctor nominated by the chief medical officer
The judicial magistrate now need only be intimated of the decision once the decision has been made
If a person has gone to the trouble of making a directive stating their wishes, why then would a medical board need to review the case, and discuss it with the family? Doesn't it defeat the whole point of having a living will?
Well, it's more complicated than that.
"Because people don't understand the medical terminology in the living will. They may say they do not want to be on the ventilator if it is futile, but there are many support systems in the ICU other than the ventilator, and when do you say certain treatment is futile, especially life support?" explains Dr Ray.
"This is why it's important to have a team of doctors who understand the illness, the futility or non-futility of the treatment options, sit together with the family and explain the situation, to arrive at decisions. It can't just be one doctor taking the call."Dr Sumit Ray, critical care specialist, Holy Family Hospital, Delhi
According to Dr Ray, these discussions take time, and they should take time, whether it's hours or days.
"Even with the new guidelines, in case there is no living will, till every first-degree close relative is convinced, doctors cannot withdraw support. So, we have to convince them which takes a fair amount of time and effort."Dr Sumit Ray, critical care specialist, Holy Family Hospital, Delhi
The Way Forward: One Step At A Time
The provision for a living will has been around in some other countries since the 1960s, and so its implementation is pretty common. This mainly has to do with advocacy, awareness, and that they have had time to get comfortable with it.
"That is not the immediate utility. The Immediate utility is to sensitise people to the fact that these rights and provisions are available," he says.
"When we get used to taking decisions like this, we are able to figure out how to refine them without compromising on the safety of checks and balances."Dr RK Mani, Member of Indian Society of Critical Care Medicine