Everything you need to know about living wills

A living will typically addresses situations such as whether to continue life-sustaining treatment. Representation Pic/iStock

With PD Hinduja Hospital & Medical Research Centre in Mahim launching a first-of-its-kind living will clinic to help patients retain control over future healthcare decisions, mid-day spoke to Dr Nikhil Datar, a renowned gynaecologist and health rights activist, whose public interest litigation (PIL) in the Bombay High Court, highlighted the Maharashtra government's failure to implement February 2022 Supreme Court directives on living wills.

The state government has to set up a web portal for living wills in the larger interest of the public good by August 16, the day when the four months' time granted by the court comes to an end. Meanwhile, P D Hinduja Hospital & Medical Research Centre in Mahim launched a first-of-its-kind living will clinic to help patients retain control over future healthcare decisions

The flashback

On April 17, 2025, the high court, in response to Dr Datar's PIL, ordered the state government to create a public web portal so as to ease out the process of living will. The state was given a deadline until August 16, 2025, to implement it.

Dr Nikhil Datar, gynaecologist and health rights activist

Dr Datar urged in his PIL that the state government be directed to implement Supreme Court guidelines on end-of-life care, which remained unaddressed. The petition criticised the outdated medical code of ethics, in terms of the current SC judgment, which doesn't permit withdrawal of life support otherwise.

In response, within six weeks from the date of filing the PIL, the state issued a GR appointing 413 officers as custodians for living wills - becoming the first in India to do so. The petitioner also became the first to prepare and submit his own living will under the SC framework.

Initially, only two custodians were assigned to Mumbai, but later, health officers were included in every municipal ward. Despite this, citizens struggled to access custodians or the system, raising concerns about transparency and hence the directives.

Excerpts from the interview.

What is a living will or advance directive?
It is a legal document where a person states their wishes about medical treatment in case they become seriously ill or unconscious and cannot make decisions for themselves. It guides doctors and family members on whether to continue or stop treatment, especially if there is no hope of meaningful recovery. This helps avoid confusion or disagreement and ensures the person's wishes are respected.

How is a living will different from a will and testament?
A will and testament outline how a person's assets and property should be distributed after their death. In contrast, a living will provides instructions about a person's medical care if they become incapacitated and unable to communicate their wishes. It typically addresses situations such as whether to continue life-sustaining treatment.

Why would someone need a living will?
In today's world, where medical technology can sometimes prolong life artificially, it can be difficult to know whether treatment is truly helping or simply delaying death. This can lead to unnecessary suffering, loss of dignity, emotional distress for loved ones, and high medical costs.

Who should have a living will?
Ideally, every human being should have a living will, regardless of age. However, it becomes especially important for middle-aged and older adults, including those who are retired. Starting to think about and prepare a living will during middle age can ensure that your medical care preferences are known and respected well before any serious health issues arise, for instance, if I'm over 70 and have terminal illnesses like cancer or Alzheimer's. In such cases, individuals can specify which treatments they want or refuse, such as ventilators, dialysis, or feeding tubes. If I have a living will, I consent to feeding tubes and saline, but refuse others. I also requested pain relief measures and included organ donation details. My draft is available at www.drnikhildatar.com for reference. Since this is personal, changes should be made as needed. If conscious, individuals decide for themselves, but if unconscious, who informs doctors about the advance directive? Therefore, the names of relatives or friends (executors) who'll decide on the person's behalf must be clearly stated and informed of their duties.

How can I update or cancel my living will?
You can update or cancel your living will by creating a new one, which will cancel the previous one. The state government, after my PIL, has appointed 413 custodians of the living will across Maharashtra. In Mumbai, they had initially appointed two BMC doctors, but seeing the population of the city, the government has decided to make each health official (medical health officer) in BMC ward offices a custodian. The state government is still in the process of making the web portal, which can be used for uploading and for verification of living wills, when required by treating doctors.

Who should have a copy of my living will?
The person who creates the living will should keep the original. Additionally, copies should be given to close family members or executors - preferably someone younger or trusted by the maker. This could include the family doctor or any individual appointed by the maker as the executor of the living will. The chosen custodian should be reliable and able to verify the document's authenticity when required.

Should I carry a card or note indicating I have a living will?
Although the Supreme Court has not mentioned anything about such cards, it is always a good idea to carry a medical card, which mentions important details and whether a living will was made and the executor's contact number. It's important to clearly name the people authorised to act on your living will (executors) in the document. Those people should know how to follow your advance directives. If there's any confusion, doctors will refer to the latest living will to decide which instructions to follow, and hence, the web portal is very important.