Budget 2020

Why registering a ‘living will’ is an arduous task despite SC guidelines

(This story originally appeared in on Feb 22, 2021)

NEW DELHI: : A retired professor of anatomy based in Mumbai in her 70s, Dr Lopa Mehta drafted her “living will”—an advance directive on end of life treatment in 2019. But she is still unable to get it registered despite guidelines that are part of the Supreme Court’s 2018 landmark judgment on passive euthanasia and living will.

It turns out that authorities and those keen on registering a living will are both struggling in the absence of standard procedures at the central or state level to implement the SC guidelines. The practical difficulties have triggered a demand from stakeholders for a comprehensive law on end of life care.

Declaring the right to die with dignity as a fundamental right, the SC recognised the legality of advance directives (living wills) and the withholding and withdrawing of life-sustaining treatment from terminally ill patients. In a recent report, Vidhi Centre for Policy Research notes that executing the directives before the judicial magistrate first class and a three-tiered process of approvals for actual decision-making are extremely arduous.

“As a result, very few people have successfully executed advance directives,” points out senior resident fellow from ‘Vidhi’ Dr Dhvani Mehta. A Chandigarh couple, Dina Nath Jauhar (73) and wife Adarsh Jauhar (66), both professors, made news in December 2019 by making living wills through the district court. Jauhar shares that it was not at all easy to get there. It took him over nine months to get to the stage where the will was registered. To address these concerns, Vidhi and the End of Life Care in India Task Force (‘ELICIT’) have come together to put out a model legal framework on end of life care in India in the form of a bill.

They now plan to reach out to central and state governments and parliamentarians to advocate for a law. The framework lays down ways to simplify protocols for end of life decision-making and safeguards like introducing the concept of end of life care committee at large hospitals to audit all decisions. Buoyed by the 2018 SC judgement, when Lopa Mehta approached the concerned metropolitan magistrate’s court the following year in Mumbai to register her will, authorities said they have no specific directions or procedures in place to register the will.

Her case is part of the application for clarification filed by the Indian Society of Critical Care Medicine in the Supreme Court, as an example of the difficulties in implementing the Court’s guidelines. Hearing the matter, in January 2020, the SC directed the Centre to convene a meeting of stakeholders to reach a consensus regarding modifications to its guidelines. Meanwhile, leading hospitals such as AIIMS, New Delhi have framed their own internal policies and the Indian Council of Medical Research (ICMR) has developed guidelines for health professionals on “Do Not Attempt Resuscitation Orders”.