Thrissur, Kerala: In March 2024, after she turned 76, Helen Thambi signed something that almost no one in India does—an advance medical directive, a document that lists multiple scenarios in which her medical treatment should be stopped if she became seriously ill.
The two-page document says that if Thambi, a homemaker, were to become bed-ridden, she should not be hooked to a ventilator or be fed by a tube, and specific health issues, such as chest infections or low oxygen levels, should not be corrected. The document, however, clarifies that she wants pain relief and palliative care until death.
Thambi is among 42 members of the Thrissur Pain and Palliative Care Society in Kerala who signed advance medical directives or AMDs in 2024. AMDs are meant to be used by doctors where a patient is incapacitated, such as in a coma, and unable to communicate. Nominees are meant to provide consent to stop treatment or disallow invasive, possibly fruitless procedures and medication, in a manner consistent with the AMD.
Though AMDs have been common in several western countries for decades, they became legal in India only after a 2018 Supreme Court judgement. But AMD registration is nearly non-existent in India because state governments have not set up enabling mechanisms.
Yet, across the country, many like Thambi have taken the first steps. Unable to complete the AMD execution process as the Supreme Court envisaged, Thambi has notarised the document so that her son and nominee clearly knows her wishes.
“I signed the document because hospitals often admit patients to the ICU or use ventilators unnecessarily,” said Thambi, a confident, composed woman and a volunteer with the Palliative Care Society for the past 17 years.
Thambi’s husband died in July 2021 at 80, a year after he was diagnosed with cancer. His cancer had been too advanced for any chance of cure, and he rejected intensive care after a previously traumatic experience in an intensive care unit (ICU).
Thambi recalled that her husband was always “particular about being well-dressed”.
“The one time he was in the ICU, he was fully conscious, and he asked the nurses many times for a shirt, but he was denied this,” she said. “He could have walked to the toilet with some help, but the nurses instead wanted to insert a urinary catheter as per protocol. Eventually I accompanied him to the toilet multiple times.”
Compassionate care for the patient gets low priority in intensive care settings, said Thambi. Her husband only opted for palliative chemotherapy to relieve symptoms and improve his quality of life.
“He died peacefully at home, surrounded by family,” she said.
The Right To Die With Dignity
Others of the Thrissur Pain and Palliative Care Society who signed AMDs, also emphasised the right to die with dignity, the right to avoid suffering from prolonged, painful treatments when there is no chance of recovery or a decent quality of life.
The Society, which operates out of a building provided by the state government, caters to terminally ill or bedridden people here or in their homes.
With an AMD, they said, their families would not feel guilty about withdrawing treatment. They clarified that intensive treatments —including surgeries for the very elderly—were appropriate if there was a good chance of cure.
“I had undergone a lot of intensive treatments earlier, and these are hard to tolerate,” said N N Gokuldas, 75, one of the founders of the Society and a cancer survivor. “For elderly people, this causes much more anxiety than in the general population. But if there is a chance of cure, we should appreciate these treatments.”
Gokuldas’s cancer has been in remission for 11 years, even though his doctor had given only a five-year “guarantee”. He decided to opt for palliative care in case he relapsed into severe illness.
“With palliative care, you make the patient comfortable, give proper pain relief, touch them only with their consent, and you do for them the things they like, such as playing their favourite songs,” said Gokuldas, a zoology professor at Sree Krishna College, Guruvayur, for 33 years before he retired in 2005 .
Nisha Joshy, 43, a nurse at the Society, is one of the youngest people here to notarise her AMD. Her nominee is her elder son, a 19-year-old college student.
“A person can become incapacitated any time—it could just be a road accident or it could happen in my old age, after my sons are settled elsewhere,” said Joshy. The suffering of end-stage patients she witnessed in her line of work probably influenced her decision to sign the AMD, she added.
At least a third of ICU patients inevitably need some sort of “treatment limitation”, a term that refers to stopping or withholding specific treatment, such as ventilators or feeding tubes.
Treatment limitation would apply to cases where partial recovery would lead to a vegetative state, or if being on, say, a ventilator would not help, said Dr Raj Mani, an intensive care physician and former president of the Indian Society of Critical Care Medicine (ISCCM).
“Without treatment limitation, you may be harming the patient physically, emotionally and financially,” said Dr Mani. “Despite this, irrational or disproportionate use of technology on such patients is very common because doctors are used to treating patients only that way or are worried about legal problems.”
Currently, treatment limitation depends on a doctor’s opinion and her shared decision-making with the family. An ISCCM petition led the Supreme Court to simplify AMD procedures through a 2023 judgement.
After the Thrissur Society members’ signing of AMDs got media coverage (here and here), about 50 people across Kerala have sought help to prepare AMDs, said Gokuldas.
“We share our AMD draft with them… a sample from the UK that we downloaded off of the Internet,” said Gokuldas. About 18 had signed AMDs by the end of July 2024.
‘Smoothening The Process Of Dying’
In its 2018 judgement, a five-member Constitution bench of the Supreme Court legalised passive euthanasia—withdrawing or withholding treatments that artificially prolong life.
The bench differentiated this from active euthanasia, where medical professionals help you die.
The judgement said that the judiciary over the years had expanded the right to life and liberty under Article 21 of the Constitution to include the right to live with dignity.
That right to live with dignity would also include “smoothening the process of dying”, said the Supreme Court, “in case of a terminally ill patient or a person in PVS [persistent vegetative state] with no hope of recovery”.
The judgement said that advance directives could enable a person’s right to live with dignity and would assure doctors that they were acting legally.
The Supreme Court set up many safeguards to prevent AMD misuse, involving magistrates and bureaucrats at various levels.
Another bench, as we said, simplified these procedures in a 2023 judgement.
How The Directives Work
The 2023 judgement allowed an AMD to be: added to personal digital records; attested by a notary or gazetted officer; and a copy given to an officer appointed as custodian in a local panchayat (village council) or municipality.
If a doctor’s opinion is that the AMD should be executed, the hospital must set up a primary medical board of three doctors, said the 2013 Supreme Court judgement. If this board certifies the execution of an AMD, the hospital must set up a secondary medical board, which includes a representative nominated by the district’s chief medical officer.
Medical boards must endorse AMDs only if “fully satisfied that the executor is terminally ill and is undergoing prolonged treatment or is surviving on life support and that the illness of the executor is incurable or there is no hope of him/her being cured”.
Both boards should give their decision within 48 hours. After the secondary board’s approval, the hospital can inform the jurisdictional magistrate and proceed with treatment withdrawal. If the boards do not approve, a patient’s nominee can approach High Court.
Differing Approaches: India & The West
Treatment withdrawals in India are meant to be a joint decision based on the patient’s AMD and the medical boards’ opinions, said experts.
“In western countries, laws emphasise the patient’s absolute medical autonomy, and AMDs are supposed to be followed as is,” said advocate Dhvani Mehta, co-founder of the think tank Vidhi Centre for Legal Policy. “But here, doctors’ opinions have an important role. This is fine, given that people drafting AMDs won’t have knowledge of all medical scenarios.”
But setting up two medical boards was “a step too far”, said Mehta, who had argued in favour of AMD in the SC cases.
When drafting AMDs, people should also specify what treatments are acceptable, so they can get sufficient palliative care, said Mehta.
Currently, even attempting to execute AMDs is an uphill battle.
No Custodians Or State Orders
Dr Nikhil Datar, a Mumbai gynaecologist and patients’ rights activist, was among the first in the country to execute his AMD in February 2023.
“But I don’t know what Mumbai corporation did with it, as the Maharashtra government had no custodians to register AMDs then,” said Datar.
After he filed a public interest litigation in the Bombay High Court in November 2023 , Maharashtra appointed 417 officials as custodians in March 2024.
The next week, Datar submitted his AMD to the custodian in the Mumbai municipal corporation. “But he was unaware that he was in charge and had not got any information on his role or what to do with the AMD,” said Datar.
“An AMD needs the custodian’s seal and an ascribed number, so that a doctor can confirm its authenticity later,” said Datar. “But this wasn’t done.”
Despite the Supreme Court’s orders, state and union governments have done nothing to recognise AMDs as part of people’s digital health records on phones and personal computers in an government application called DigiLocker or Ayushman Bharat health accounts under the union government’s digital health mission.
Setting Up Secondary Boards, Quickly
Another concern is the possible delay in setting up secondary medical boards.
Datar has requested the Bombay High Court to direct the Maharashtra government to “empanel” or shortlist doctors who can be quickly drafted into secondary medical boards when needed, instead of a district chief medical officer nominating a representative each time.
His public interest litigation also requested that the government publicise AMDs, since currently most doctors are unaware of them.
“Maharashtra government said in court that they had created awareness, but their detailed responses showed that they had only put up the information on their notice boards,” said Datar. “Only 4% of local bodies had given advertisements in newspapers.”
In Pune, Uday Thakurdesai, who lives in a retirement community called Athashri Baner, faced the same problem as Datar when trying to execute his AMD.
“When I approached the custodian in Pune corporation, he contacted many officials to find out what he had to do, but nobody knew,” said Thakurdesai. “Eventually he couldn’t do anything other than give me an acknowledgement.”
What States Are (Not) Doing
In Uttar Pradesh, the state health department responded to Dr Raj Mani that they could act on AMDs only after getting official communication from the registrar general of Allahabad High Court.
This is because the 2023 Supreme Court judgement mentions that the registrar generals of all high courts should send a copy of the judgement to the health secretaries of their states.
“This was only for the purpose of informing states,” said Mani. “Besides, the judgement is already in the public domain, so the state can act anyway.”
The ISCCM then wrote to the registrar generals of high courts nationwide to forward a copy of the judgement to their state governments.
In Karnataka, Dr Nagesh Simha, former president of the Indian Association of Palliative Care (IAPC), sought implementation of the Supreme Court order from health minister Dinesh Gundu Rao in 2023, but has not heard back.
The Odisha government formed a committee in September 2023 to consider and finalise a draft framework that Mehta, the advocate previously quoted, had developed for AMD implementation. The draft framework suggests what state governments can do, including issuing orders to officials and how to empanel doctors.
Goa Shows The Way
Goa is the only state that has a process to operationalise AMDs, along with a network of custodians and empanelled doctors.
In May 2024, high court judge Justice M S Sonak became the first person in Goa to register an AMD.
“It’s an achievement that different authorities in Goa came together to do this,” said Mehta. “There are some deviations from the SC directions though—for example, Goa’s draft AMD says the nominee should be the person’s guardian or relative, but as per the court judgement it could be anybody. Even then, Goa has set a precedent for other states.”
In New Delhi, an expert panel appointed by the Director General of Health Services (DGHS) has submitted draft guidelines for treatment withdrawal.
These guidelines have now been uploaded online for public comments. Once finalised, state governments can adapt and use these, said a DGHS official, speaking on condition of anonymity since he was not authorised to speak to the media.
Though the union government had earlier told the Supreme Court that they planned a law on passive euthanasia, there’s been no public announcement.
‘The Doctor Can’t Force It On Me’
Though no custodian has acknowledged their AMDs, members of the Palliative Care Society in Thrissur are confident that their nominees will request treatment withdrawal when required.
“If my son requests the doctor to withdraw treatment, the doctor can’t force it on me,” said Gokuldas, the cofounder of the Society quoted previously.
But Dr Satheesh Kumar C, Society member and a retired government doctor, said doctors would find it difficult to obey an AMD if the family of a patient disagreed.
“Doctors can’t withdraw treatment in such scenarios, as they won’t have legal protection [without an AMD],” said Satheesh Kumar. “In my AMD, I have mentioned my daughter as my nominee—and not my wife—as I know she will be able to make a strong decision if needed. So, currently, a lot depends on how clear and assertive the nominee is.”
Members of the Society plan to send their 42 AMDs together to the Thrissur municipality, hoping to pressure officials into responding.
Datar said that doctors would need clear advance directives to confidently withdraw treatment, in the absence of an established mechanism for treatment withdrawal currently.
“Some relatives may decline treatment and take the patient home without even basic pain relief,” said Datar. “Other relatives may have diagonally opposite views. Even the doctor's code of medical ethics in its current form does not allow the doctor to withdraw treatments like ventilators.”
‘Speaking About Death Is Taboo’
Many individuals and organisations, such as Datar in Mumbai, Thakurdesai in Pune, the Pro Bono Club of the Maharashtra National Law University, and the IAPC in Delhi, are helping people draft AMDs.
“But we don’t know if these documents are going to be of any use,” said Dr Datar.
Shiv Kumar, a Karnataka High Court lawyer who has helped five from Bengaluru draft AMDs, said cultural factors were a bigger barrier than government inaction.
“When I speak about [AMDs] to an audience of 100, only a couple of them end up making AMDs, and these are mostly people who have seen the suffering of a terminally ill person,” said Shiv Kumar.
“Speaking about death is taboo in our society,” he said. “People don’t want to discuss it with their relatives or doctor. Besides, even the current process is tedious for elderly people, especially those with limited mobility.”
Meanwhile, nurse Joshy from Thrissur has left it to her son to understand and abide by her wishes.
“My husband works abroad, so my son is the one who always supported me at home,” said Joshy. “In a sense, he and I grew up together since I had him at a young age. He didn’t mind me signing the AMD. I will not have any regrets, whatever he decides.”
(Navya P K is an independent journalist based in Kerala. She writes on health, environment and human rights.)
Editor's note: After the story was published, we learned that Karnataka health minister Dinesh Gundu Rao recently directed the ministry to implement the Supreme Court judgement in the state. The development came about after Dr Nagesh Simha, former president of the Indian Association of Palliative Care, met the minister last month.
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