Breaking the taboo around ‘living wills’ in India

In 2010, IP Yadev, a surgeon from the southern Indian state of Kerala, was confronted with one of the hardest decisions of his life.

He had to decide between keeping his father – a terminal cancer patient – alive, and honouring his wish, expressed verbally, to stop all treatments and put an end to his suffering.

Warning: This article contains some distressing details

“As a son, I felt it was my duty to do whatever I could to prolong my father’s life. This made him unhappy and he ended up dying alone in an intensive-care unit. The doctor’s last efforts to revive him using CPR crushed his ribs. It was a horrible death,” Dr Yadev says.

The experience, he says, deeply impacted him and helped him realise the importance of advance medical directives (AMDs), also known as living wills.

A living will is a legal document that allows a person over 18 years to choose the medical care they would want to receive if they develop a terminal illness or condition with no hope of recovery and are unable to make decisions by themselves.

For example, they could specify that they don’t want to be put on life-support machines or insist that they want to be given adequate pain-relieving medication.

In 2018, India’s Supreme Court allowed people to draw up living wills and thereby choose passive euthanasia, where medical treatment can be withdrawn under strict guidelines to hasten a person’s death. Active euthanasia – any act that intentionally helps a person kill themselves – is illegal in the country.

But despite the legal go-ahead, the concept of living wills hasn’t really taken off in India. Experts say that this has much to do with the way Indians talk, or rather, don’t talk about death. Death is often considered to be a taboo subject and any mention of it is thought to bring bad luck.

But there are now efforts underway to change this.

In November, Dr Yadev and his team launched India’s first programme – at the Government Medical College in Kerala’s Kollam district – to educate people about living wills, offering information in person and over the phone. Volunteers also conduct awareness campaigns and distribute will templates.

Creating a living will requires family members to have open and honest conversations about death. Despite some resistance, activists and institutions are taking steps to raise awareness, and there’s a growing, though cautious, interest.

Kerala leads the way in these conversations. Currently, it has the country’s best palliative care network, and organisations that offer end-of-life care have also started awareness campaigns around living wills.

In March, around 30 people from the Pain and Palliative Care society in Thrissur city signed living wills. Dr E Divakaran, founder of the society, says that the gesture is aimed at make the idea more popular among people.

“Most people have never heard of the term so they have many questions, like whether such a directive can be misused or if they can make changes to their wills later on,” Mr Yadev says, adding that most inquiries have come from people in their 50s and 60s.

“Right now, it’s the educated, upper-middle class that’s making use of the facility. But with grassroot awareness campaigns, we’re expecting the demographic to widen,” he says.

According to the Supreme Court order, a person must draft the will, sign it in the presence of two witnesses, and have it attested by a notary or gazetted officer. A copy of the will must then be submitted to a state government-appointed custodian.

While the guidelines exist on paper, many state governments are yet to set up mechanisms to implement them. This is what Dr Nikhil Datar, a gynaecologist from Mumbai city, realised when he made his living will two years ago as there was no custodian to whom he could submit it.

So he went to court and it resulted in the Maharashtra government appointing about 400 officials across local bodies in the state to serve as custodians of living wills.

In June, Goa state implemented the Supreme Court’s orders around living wills and a high court judge became the first person in the state to register one.

On Saturday, Karnataka state ordered district health officers to nominate people to serve on a key medical board required to certify living wills. [Two medical boards have to certify that a patient meets necessary criteria for the implementation of a living will before medical practitioners can act on it.]

Mr Datar is also advocating for a centralised digital repository for living wills, accessible nationwide. He has also made his own will available for free on his website as a template. He believes a will helps prevent problems for both families and doctors when a patient is in a vegetative state and beyond recovery.

“Very often, family members don’t want the person to endure more treatment but because they can’t care for the patient at home, they keep them in the hospital. Doctors, bound by medical ethics, can’t withhold treatment, so the patient ends up suffering with no way to express their wishes,” Mr Datar says.

Living wills aren’t just about choosing passive euthanasia. Dr Yadev recalls a case where a person wanted his will to specify that he should be placed on life support if his condition ever required it.

“He explained that his only child was living abroad and that he didn’t want to die until his son got to meet him,” Mr Yadev says. “You have the freedom to choose how you want to die. It is one of the greatest rights available to us, so why not exercise it?” he says.

Healthcare advocates say that conversations around palliative care are slowly growing in the country, giving an impetus to living wills.

Dr Sushma Bhatnagar of Delhi’s All India Institute of Medical Sciences says the hospital is launching a department to educate patients about living wills. “Ideally, doctors should discuss living wills with patients, but there’s a communication gap,” she says, adding that training doctors for these conversations can help ensure a person dies with dignity.

“Throughout our lives, our choices are coloured by our loved ones’ wishes or by what society thinks is right,” Mr Yadev says.

“At least in death, let us make choices that are in our interest and fully our own.”