New DelhiWhen an 82-year-old critically ill cancer patient approached advocate Shreya Srivastava to execute a ‘living will’ in May last year, it took almost a month to complete the process because of the cumbersome legalese involved. procedures were involved.
Srivastava told ThePrint, “The procedure was really difficult and impractical, especially for an elderly woman who was already suffering a lot.
Therefore, when the Supreme Court simplified January 24 brought relief to many from the process of execution of living wills or advance directives.
Based on an application filed by the Indian Society for Critical Care Medicine (ISCCM), the apex court has modified the procedure “The right to die with dignity” more accessible and less bureaucratic.
In March 2018, a constitution bench of the Supreme Court recognized the right to die with dignity as a fundamental right and legalized “passive euthanasia”, which involves life-sustaining treatment for critically ill patients. involves termination. It also laid down guidelines for seriously ill patients to enforce advance medical directives or rights through a living will – a legal document detailing a person’s wishes for future medical procedures.
However, court-set guidelines and cumbersome procedures made it difficult for these patients to execute living wills.
five years Later, on January 24, the Supreme Court agreed to modify the existing guidelines to make the process less cumbersome. Now there will be no role of magistrate execution and implementation of an advance directive. The court also simplified the composition of the medical boards that will determine whether life-support systems can be withdrawn. Further, it prescribed time limits for these boards to take such decisions.
There is agreement that the guidelines have become significantly less cumbersome, allowing 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 responsibility for their final days.
Read also: What is ‘living will’ and what is the Supreme Court hearing on passive euthanasia all about
‘Earlier verdict discouraged doctors’
before the Supreme Court Verdict 2018 Mumbai-based writer Sindhu S. a strong proponent of end-of-life caresaw her father Tolerate Severe pain during medical treatment for multiple organ failure at a hospital in Kerala, April 2015.
Describing her father’s agony to ThePrint, Sindhu said: “My father was sure that he wanted none of this pain. This is the height of cruelty, when you cannot even say no. If we had advance instructions, it could have been prevented.
When the Supreme Court recognized advance directives in 2018, Sindhu was hopeful. “I’m hoping that at least some people survive this – at least those who know about the verdict. I want to do that too. We can at least try to avoid all this pain.” ‘
However, the 2018 verdict made things more difficult on the ground, say experts.
“before 2018 To make the decision, doctors usually asked the family about the patient’s willingness to stop or withdraw treatment. But after the judgment laid down this complicated process, it became difficult for doctors to follow up on an ‘advance’ medical directive that was not executed properly as per the Supreme Court guidelines, said Srivastava, who is a senior resident fellow , health, law are also there, the Center for Legal Policy told ThePrint.
“So doctors were more discouraged to withhold life-sustaining treatments because of the guidelines, and they had the opposite effect on the ground,” she said.
The ISCCM filed an application in July 2019, requesting the apex court to set up a constitution bench to modify certain guidelines laid down in the 2018 judgement. The society insisted that the procedure prescribed for terminally ill patients was extremely cumbersome and “unworkable”.
Srivastava was assisted by senior advocate Arvind Datar, who argued the matter on behalf of ISCCM.
‘Magistrates would have been in hospitals all day’
Last Month’s Detailed Supreme Court Order 2018 brings several changes to the prescribing process. One of the major changes introduced doing away Involvement of Judicial Magistrate First Class (JMFC) in the process of execution and implementation of Living Will.
The earlier judgment required a JMFC designated by the District Judge to countersign the advance directive, and it was placed on record that the same was 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 when medical boards decide to stop or withdraw medical treatment to a critically ill patient. This requirement of JMFC to meet the patient has also been removed.
Advocate Dr Dhvani Mehta, co-founder and head of Vidhi Center for Legal Policy, believed that this change would make it possible to follow advance directives in “a real-time, ICU-like situation”.
“India has a very large number of ICU patients, and a significant proportion of them require end-of-life care decisions to be made for them. In such a scenario, in a big metropolitan city, judicial magistrates would be making rounds of hospitals all day long if the court’s guidelines were to be actually implemented,” she explained.
Mehta also assisted Datar in arguing for an application to simplify the guidelines.
The original procedure envisaged by the apex court was provided for by the two boards. There was a primary board, which was constituted by the hospital. The second was a secondary board, constituted by the respective district collectors to decide on withholding or denying 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.
ISCCM, in its application, urged the court to mandate the constitution of a second medical board if the patient’s relatives or guardians want a second opinion.
While the Supreme Court did not agree to an alternate secondary board, it ruled that both boards would now be created by the hospital. The composition of the board has also been simplified. For example, the experience requirement of 20 years has been reduced to five years for doctors to be a part of this board. Both the boards have to form an opinion preferably within 48 hours.
‘Distrust in the medical profession’
Mehta insisted that the Supreme Court order simplifying the process would make things less bureaucratic – both in terms of executing a living will as well as enforcing it.
He explained the reason behind advocating the removal of the Secondary Board. “At the end of the day, it is a fairly routine medical decision to withhold or withdraw life-sustaining treatment. I do not think that such a bipartite process exists in other countries, unless there is a dispute involved. If every If there is a consensus, I personally don’t see the need to pursue it further,” Mehta said.
“We really hope for a legislative framework around this to facilitate this kind of decision-making. But unfortunately, there is a deep distrust of the medical profession, which is something doctors have to introspect on ”
“Before doctors can start making these decisions routinely, before they can start building that trust with family members and patients, we need to see the process before it works, ” He said.
Srivastava pointed out that he had faced a lack of awareness about the 2018 judgment even within the judicial and legal system, which had added to the difficulties in helping his client represent him in a court. Advance medical directive in place.
Among other things, Srivastava said he would have to write a detailed letter to the district judge to inform him of the 2018 judgment and nominate a magistrate for the purpose. Later, after court hours, he had to have a detailed discussion about the verdict with this magistrate.
“Lack of awareness was definitely a factor, and there is still a lot of work that needs to be done in terms of sensitization, telling people about it, making patients aware about it. It will definitely help, now that the process has finally become easier,” she said.
time of death literacy
Laws on advance directives in other countries focus on “patient self-determination”, said Dr Roop Gursahni, neurologist at PD Hinduja Hospital in Mumbai and member of the ELICIT (End of Life Care in India Taskforce). it means that it is At the end The patient who has the right to decide whether to accept treatment or care.
However, he pointed out that in India, patient self-determination takes a back seat when the process takes place “essentially between the medical and the legal profession”.
“Hand it over to the patient, and let them take care of their body and make their own decisions. So patient self-determination needs to come first. We, as doctors, are only helping them implement it,” he Said.
He added that a patient’s self-determination develops from an “end-of-life understanding”. He said that to make this possible, “death literacy” – knowledge and skills – is needed among the general public. Needed To plan well for the end of life and make informed choices about death care options.
Gursahni said such death literacy is “non-existent” in most parts of India apart from Kerala. He explained that this is because Kerala has seen a huge social movement for palliative care – which emphasizes relief of physical, psychological and emotional suffering for patients suffering from life-threatening illnesses, as well as their families. is, instead of focusing. ‘Treatment’.
as the World Health Organization (WHO) keeps, Palliative care “provides a support system to help patients live as actively as possible until death”.
Gursahni said that the latest order of the Supreme Court would facilitate self-determination in death.
“The guidelines have now become ‘pragmatic’ 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’s our responsibility as doctors to help families take charge.”
(Edited by Geetalakshmi Ramanathan)
Read also: ‘The ICU is a terrible place to die’: when skipping treatment is the best option