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Dying with dignity is now easier. Experts say next step is to educate people on their rights

Apex court simplified the procedure for executing living wills last month, making ‘right to die with dignity’ more accessible. Experts say promoting ‘death literacy’ is key now.

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New Delhi: When an 82-year-old terminally ill cancer patient approached advocate Shreya Shrivastava to get a ‘living will’ executed in May last year, completing the process took nearly a month because of the cumbersome legal procedures involved. 

“The process was really difficult and impractical, especially for an elderly woman who was already suffering so much,” Shrivastava told ThePrint. 

Therefore, when the Supreme Court simplified the procedure for the execution of living wills, or advance directives, on 24 January, it came as a relief to many. 

Based on an application filed by the Indian Society for Critical Care Medicine (ISCCM), the apex court’s modification of the procedure has made the “right to die with dignity” more accessible and less bureaucratic.  

Back in March 2018, a Constitution Bench of the Supreme Court had recognised the right to die with dignity as a fundamental right and had legalised “passive euthanasia”, which includes ending life-sustaining treatment for terminally ill patients. It also laid down guidelines for terminally ill patients to enforce the right, through an advance medical directive or living will — a legal document that details a person’s wishes for future medical procedures.

However, the guidelines and the cumbersome procedures laid down by the court made it difficult for these patients to execute a living will. 

Five years later, on 24 January, the Supreme Court agreed to make this process less cumbersome by modifying the existing guidelines. A magistrate will no longer play a role in the execution and implementation of an advance directive. The court also simplified the composition of the medical boards that must determine whether life-support systems can be withdrawn. Further, it set time limits for these boards to take such decisions. 

There is consensus that the guidelines have become significantly less unwieldy, thereby enabling them to be implemented in real-time situations.

Experts now believe that it is “death literacy” and awareness among people that will enable them to exercise their right to take charge of their last days. 

Also read: What is ‘living will’ and what are the Supreme Court’s hearings on passive euthanasia about

‘Earlier judgment discouraged doctors’

Before the Supreme Court’s 2018 judgement, Mumbai-based writer Sindhu S, a strong advocate of end-of-life care, saw her father endure severe pain during his medical treatment for multiple organ failure at a hospital in Kerala in April 2015. 

Describing her father’s ordeal to ThePrint, Sindhu said: “My father was sure that he didn’t want any of this pain. This is the height of cruelty, when you can’t even say no. If we had an advance directive, this could have been prevented.”

When the Supreme Court recognised advance directives in 2018, Sindhu was hopeful. “I am hoping at least some people will be saved by this — at least those who are aware about the judgment. I want to do this too. We can at least try to escape all this pain,” she said. 

However, the 2018 judgment only made things more difficult on the ground, experts say. 

“Before the 2018 judgment, doctors usually used to ask the family about the wishes of the patients for withholding or withdrawing treatment. But after the judgment laid down this complex procedure, it became difficult for doctors to go by an ‘advance’ medical directive which was not executed exactly as per the Supreme Court guidelines,” Shrivastava, who is also a senior resident fellow, Health, Vidhi Centre for Legal Policy, told ThePrint.

“So doctors were more discouraged to withdraw life-sustaining treatment because of the guidelines, and they had the opposite effect on ground,” she added. 

The ISCCM filed an application in July 2019, requesting the top court to form a Constitution bench for modifying some of the guidelines prescribed in the 2018 judgment. The society asserted that the procedure laid down for terminally ill patients was extremely cumbersome and “unworkable”.

Shrivastava assisted senior advocate Arvind Datar who argued the case on behalf of the ISCCM.

‘Magistrates would have been in hospitals all day’

Last month’s detailed Supreme Court order brings about a host of changes in the process laid down in 2018. One of the major changes introduced is the doing away of the involvement of the Judicial Magistrate First Class (JMFC) in the process of execution and implementation of the living will. 

The earlier judgment required a JMFC designated by the district judge to countersign the advance directive, and put it on record that it had been executed voluntarily. This can now be done by a notary or a gazetted officer. The old guidelines also required the JMFC to visit the patient and examine all aspects, after the medical boards take a decision on withholding or withdrawing medical treatment to a terminally ill patient. This requirement for the JMFC to visit the patient has also been removed. 

Advocate Dr Dhvani Mehta, co-founder and lead, Health, Vidhi Centre for Legal Policy, believed that this change will make it feasible to follow advance directives in “a real-time, ICU-like situation”.

“There is a very large volume of ICU patients in India, and a significant proportion of them require end-of-life care decisions taken for them. In such a scenario, in a large metropolitan city, the judicial magistrates would just have been doing the rounds of hospitals all day if the court guidelines had to be actually implemented,” she explained.

Mehta also assisted Datar in arguing for the application for simplifying the guidelines.

The original process envisaged by the apex court provided for two boards. One was the primary board, constituted by the hospital. The other was a secondary board, to be constituted by respective district collectors to decide on the withdrawal or refusal of further medical treatment to the patient. The latter board was to be headed by the chief medical officer (CMO) of the district. This meant that the decision-making process was mediated by government officials rather than being limited to the patient’s relatives and doctors. 

The ISCCM, in its application, pleaded with the court to make the constitution of a second medical board mandatory only if relatives or a guardian of the patient wanted a second opinion.

While the Supreme Court did not agree to an optional secondary board, it has ruled that both the boards will now be formed by the hospital. The composition of the board has also been simplified. For instance, the requirement of 20 years of experience for doctors who would be a part of this board has been relaxed to five years. Both the boards have to form an opinion preferably within 48 hours.

‘A distrust in the medical profession’

Mehta asserted that the Supreme Court’s order simplifying the procedure would make things less bureaucratic — both in terms of executing a living will as well as implementing it.

She explained the reasoning behind advocating the removal of the secondary board. “At the end of the day, it’s a fairly routine medical decision to withhold or withdraw life-sustaining treatment. I don’t think this kind of two-tiered process exists in other countries, unless there is a dispute involved. If everyone is in consensus, I personally don’t see the need to escalate it further,” Mehta said.

“We really hoped for a legislative framework around this so that it facilitates this kind of decision making. But unfortunately, there is a deep distrust of the medical profession, which is something that doctors will have to introspect on,” she added. 

“So before doctors can begin taking these decisions routinely, before they can begin building up that trust with family members and patients, we will have to go through this process first to see how it works,” she said.

Shrivastava pointed out that she had encountered a lack of awareness about the 2018 judgement even within the judicial and legal system, which had added to her difficulties in helping her client put an advance medical directive in place.

Among other things, Shrivastava said she had to write a detailed letter to the district judge to apprise him of the 2018 judgment and designate a magistrate for the purpose. Later, she had to have a detailed discussion about the judgment with this magistrate after court hours.

“Lack of awareness was definitely a factor, and even now a lot of work needs to be done with respect to sensitisation, letting people know about this, making patients aware about this. It would definitely help, now that the process has finally become easier,” she said.

Time for death literacy

Laws on advance directives in other countries focus on “patient self-determination”, said Dr Roop Gursahani, neurologist in PD Hinduja hospital in Mumbai and a member of ELiCiT (End of Life Care in India Taskforce). This means that it is ultimately the patient who has the right to decide whether or not to accept a treatment or care.

However, he pointed out that in India, patient self-determination takes a backseat when the process is “essentially between the medical and legal profession”.

“Hand this over to the patient, and let them take care of their body and make their own decisions. That’s why patient self-determination needs to come first. We, as doctors, are also only helping them implement it,” he said.

He added that that a patient’s self-determination evolves from “an understanding of what end of life is about”. For this to be possible, he said, there needs to be “death literacy” among the general public — the knowledge and skills needed to plan well for end of life and make informed choices about death care options. 

Gursahani said that such death literacy is “non-existent” in most parts of India, apart from Kerala. He explained that this is because Kerala has witnessed a huge social movement for palliative care — which places emphasis on relief from physical, psychological, and emotional suffering for the patients suffering from life-threatening illnesses as well as their families, instead of focusing on a ‘cure’.

As the World Health Organisation (WHO) puts it, palliative care “offers a support system to help patients live as actively as possible until death”.

Gursahani said the latest Supreme Court order will facilitate self-determination in death. 

“The guidelines have now become ‘workable’ and put the onus on doctors to engage in these conversations, to make it possible for patients and families to take charge of their last days,” he said. “And it is our responsibility as doctors to help families take charge.”

(Edited by Geethalakshmi Ramanathan)

Also read: ‘ICU is a terrible place to die’: When letting go of treatment is the best choice


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