After 13 years, Harish Rana’s silent struggle came to an end.
The 31-year-old comatose patient became the first Indian to die from passive euthanasia on Tuesday. Harish was a BTech student at Panjab University in 2013, who suffered from severe head injuries after a fall from the fourth-floor balcony of his hostel. He was on artificial nutrition support and occasional oxygen support in a coma.
And in death, he paved the way to keep our basic rights intact, even at the final moment of our lives.
It was on March 11 that the Supreme Court finally cleared a legal path for a dignified exit. India had already recognised passive euthanasia back in 2018. However, it was the recent judgment that marked the first time a court approved it for an individual.
As part of the judgment, the court also established guidelines for writing a living will, allowing individuals to have a say in their final moments. The will or Advance Medical Directive allows a person to deny or withdraw life-sustaining treatment if they develop terminal illness or fall into a persistent vegetative state.
However, what is the reality? How much is the living will respected when it comes to end-of-life care?
Death literacy
In Kerala, the situation is caught between medical advancement and the lack of ‘death literacy’, say experts. According to mental health and palliative care specialists, that means we need to talk about death, the process of dying and grief.
Dr M R Rajagopal, the father of palliative care in India, recalls a haunting incident. When a family finally ran out of money, a private hospital discharged her husband, who was on life support
“They put him in an ambulance, handed the wife an artificial breathing bag, and sent them away. She took him to a government hospital where they said they had no beds in the ICU. But by the time, the patient had died. That woman continues to undergo psychiatric treatment today,” he says.
Due to ICU costs, the entire family was wiped out financially.
According to him, society now views death as a cultural taboo. “We have become a death-denying society. We view death as an enemy to be feared rather than a part of life. And we somehow make our dear ones cling on, not allowing them to die, keeping them alive painfully in ICUs,” he adds.
To overcome this, he suggests clubs and organisations to restart the conversation about death.
“I have made my own living will; the best way to start is to gain courage, do it yourself, and then talk about it,” he adds.
However, in India, he adds, families often override such decisions, and doctors are helpless but to disregard the patient’s wishes. The reason, he says, is the word ‘euthanasia’.
The term ‘euthanasia’ generates guilt, Dr Rajagopal says. He notes that some religious heads immediately rejected the 2018 verdict due to the term. “We must frame it correctly; it is not killing but allowing a natural death.”
‘Second childhood’
While psychiatrist Dr Arun B Nair agrees, he adds that Kerala’s healthcare system is not yet prepared for the concept of living will.
The reason, he says, is that our culture is not ready. “Often, families prolong a patient’s suffering not out of hope, but due to pressure from peripheral relatives or the fear of being judged for ‘trying to save money’ by stopping treatment,” he explains.
Dr Arun describes the ICU as a scary place filled with constant alarms and the trauma of witnessing others’ deaths.
“ICU psychosis — a state of delirium where a patient loses the sense of day and night, leading to extreme fear and screaming — is a common occurrence. For a terminal patient, this is an unnecessarily traumatic way to exit.
Most people wish to spend their last moments with loved ones. We must ask: why make their last days a nightmare when we know recovery is impossible?” he says.
He points to the tendency of our society to regulate the lives of the elderly. We restrict their diet and movement in an attempt to prolong life at any cost. Instead, he advocates for a philosophy of a “graceful exit”. “Treat the final years as a second childhood, allowing the elderly the freedom to enjoy simple pleasures,” he says.
“This shift in thinking requires an overhaul of medical education, which currently treats palliative and end-of-life care as mere exam topics rather than essential clinical values,” he explains.
Nitty gritties
And it can start by facilitating the living will, says Sreejith S Nair, advocate and Notary at the High Court of Kerala. “A will under the Indian Succession Act is a testamentary document that only becomes valid after death. A ‘living will’ is fundamentally different. It is an Advance Medical Directive that must be valid before death,” he explains.
The Supreme Court has directed that living wills be handed over to a competent officer in local self-government. “However, currently, there is no designated office or officer authorised to accept these in many local bodies,” he says, while adding that, “officers are hesitant because they are waiting for government notification.”
Right now, the Supreme Court verdict is the law, but the administrative machinery in Kerala has not yet been triggered, Sreejith believes.
Why we need it?
Studies show that 55 million Indians are pushed below the poverty line by health expenditures annually, much of it occurring at the end of life. Palliative care is one of the cheapest forms of treatment, yet only four per cent of Indians have access to it. In the private sector, there is often hesitation to suggest the withdrawal of life support because it is viewed as an income-generating process. “A living will makes it safer for doctors to act by removing the fear of litigation,” says Dr Arun. He suggests that every hospital with an ICU should establish a dedicated ‘living will counter.’ “This was a key request from a recently held senior citizens’ forum. These counters would allow anyone to receive education on Advance Medical Directives and get help from professionals, such as medical social workers, to draft and register their Living Wills properly,” he concludes.