Anjana Karnik, 76, and her advocate husband, Uday Karnik, 78, have just signed a living will, a legal document that allows people the right to specify the medical treatment they would or would not want if they become terminally ill or are unable to communicate their wishes. Their decision was shaped by personal experience. “My mother was in a vegetative state towards the end of her life and my father-in-law endured much pain. We do not wish to find ourselves in such a helpless condition. Instead, we would prefer to leave this world while still in an active state and do not want any artificial life-sustaining treatment,” says the Mumbai-based resident.
At Pune’s Athashri senior citizen housing complex, 73-year-old Uday Thakurdesai has taken the lead in helping as many as 70 residents execute their living wills. “There is a lot of resistance, as no one wants to discuss death. But with great effort, we held workshops where a notary was present and got it done,” he recalls. The Maharashtra government is now digitising these records for quick retrieval at the time of decision-making.
Thakurdesai, a retired director of a financial firm, and the Karniks are among a growing number of people who are making pragmatic decisions about their end-of-life care. By executing their own living wills and motivating others to do the same, they are seeking to ensure greater control over how their final days unfold.
What is a living will?
A living will, formally known as an Advance Medical Directive, is a legal document outlining your preferences for medical treatment if you become incapacitated or terminally ill and cannot communicate. It specifies wishes regarding life-sustaining treatments like ventilators, feeding tubes, and CPR. It includes the option to refuse life-support or other artificial life-sustaining interventions.
In situations where medical science can prolong life artificially, such directives provide clarity to doctors and families, who might otherwise face ethical dilemmas or legal challenges when making critical decisions.
Terminally ill patients with no hope of recovery can, through a living will, choose to avoid prolonged suffering and instead opt for a dignified end. The Supreme Court legalized living wills in 2018 and further simplified the process in 2023, making it easier for individuals to formalize their wishes.
How a doctor’s PIL played a key role
Maharashtra has taken a step forward and is now moving toward maintaining digitised records of living wills. This development follows sustained efforts by Mumbai-based gynaecologist Dr Nikhil Datar, who filed a Public Interest Litigation in the Bombay High Court, paving the way for a formal mechanism to help individuals create and store these directives.
“My petition highlighted the need for a proper mechanism to help people complete the process easily, ensure dignity in end-of-life decisions, and enable quick retrieval of living wills even years after they are made,” Dr Datar says.
The initiative aims to strengthen both the legal and procedural framework. As per a state government resolution dated April 7 this year, a dedicated portal will be integrated into the mahaulb.in website. This platform will allow citizens to permanently preserve their living wills. Individuals will be required to upload their documents and schedule appointments with designated custodians — municipal commissioners and chief officers of municipal councils and panchayats — who will ensure that these records are formally archived.
Challenges persist: awareness, accessibility, and sensitivity
Despite this progress, experts have raised several concerns, particularly about the role assigned to municipal corporations, municipalities and panchayats. Advocate Asim Sarode argues that instead of relying on bodies already burdened with diverse public responsibilities, a medical officer could have been appointed as the competent authority at the district level, supported by designated officials at the taluka level.
A senior civic administration official noted that although more than 400 custodians were appointed across Maharashtra two years ago, there has been minimal follow-up in terms of training them to guide senior citizens through the process. Consequently, many elderly individuals remain unaware of their existence. Authorities from the Pune Municipal Corporation added that fewer than 100 living wills have so far been registered and submitted.
The portal for uploading Living Wills is yet to be activated. Advocate Aditi Kane, who has conducted several awareness sessions on the subject, emphasized the need for greater procedural clarity and a more sensitive approach when dealing with end-of-life decisions.
Advocate Sarode further points out that the move toward online registration could introduce additional challenges for both individuals and their families. “The cost of registration, including legal fees, may be unaffordable for many. Government agencies have collectively recognised the right to create a living will, but more needs to be done to make the process practical and accessible,” he says.
Thakurdesai echoes similar concerns about accessibility, noting that senior citizens may still face difficulties navigating the system — particularly when required to visit custodians at the municipal ward level.