Breaking the taboo around ‘living wills’ in India

In 2010, IP Yadev, a surgeon from the state of southern Kerala India, faced one of the most difficult decisions of his life.

He had to decide between keeping his father, a patient with terminal cancer, alive, and honor his desire, express himself verbally, stop all treatments and put an end to his suffering.

WARNING: This article contains some distressing details

“As a son, I felt that it was my duty to do everything possible to prolong my father’s life. This made him unhappy and ended up dying only in an intensive care unit. The doctor’s last efforts to relive it using RCP crushed his ribs. A horrible death, “says Dr. Yadev.

The experience, he says, impacted it deeply and helped him realize the importance of advanced medical directives (AMD), also known as living wills.

A living testament is a legal document that allows a person for more than 18 years to choose medical attention that I would like to receive if it develops a terminal disease without hope of recovery and cannot make decisions for themselves.

For example, they could specify that they do not want them to be put on life support machines or insist that they want to receive appropriate medications for pain relief.

In 2018The Supreme Court of India allowed people to elaborate living wills and, therefore, choose passive euthanasia, where medical treatment can be withdrawn under the strict guidelines to accelerate the death of a person. Active euthanasia, any act that intentionally helps a person to commit suicide, is illegal in the country.

But despite the legal approval, the concept of living testaments has really not taken off in India. Experts say that this has a lot to do with the way the Indians speak, or rather, do not talk about death. Death is often considered a taboo issue and it is believed that any mention of it brings bad luck.

But now there are ongoing efforts to change this.

In November, Dr. Yadev and his team launched the first program in India, at the Government Medicine Faculty in the Kollam district of Kerala, to educate people about living wills, offering information in person and by phone . Volunteers also carry out awareness campaigns and distribute templates.

Creating a living testament requires family members to have open and honest conversations about death. Despite some resistance, activists and institutions are taking measures to raise awareness, and there is a growing interest, although cautious.

Kerala leads the way in these conversations. Currently, the country has Best Palliative Care Networkand organizations that offer attention at the end of life have also begun awareness campaigns on 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 society, says that the gesture aims to make the idea more popular among people.

“Most people have never heard of the term, so they have many questions, as if such directive can be misused or if they can make changes in their wills later,” says Yadev, adds that most of the majority of the consultations come from people in their 50 and 60.

“At this time, it is the educated and high class that is using the installation. But with the base awareness campaigns, we hope that demography will be expanded,” he says.

According to the order of the Supreme Court, a person must write the will, sign it in the presence of two witnesses and have it attested by a notary or a gazethe officer. Then a copy of the will to a custodian designated by the state government must be presented.

While guidelines exist on paper, many state governments have not yet established mechanisms to implement them. This is what Dr. Nikhil Datar, a gynecologist from the city of Mumbai, realized when he made a living two years ago, since there was no custodian who could present it.

So he went to court and turned out that the Maharashtra government designated some 400 officials in the local state agencies to serve as custodians of living wills.

In June, The State of Goa implemented the orders of the Supreme Court Around the living wills and a judge of the Superior Court became the first person in the State to register one.

On Saturday, Ordered Karnataka State The health officers of the district will nominate people to serve in a key medical board necessary to certify living wills. (Two medical meetings have to certify that a patient meets the criteria necessary for the implementation of a living will before doctors can act accordingly).

Mr. Datar also advocates a centralized digital repository for living wills, accessible throughout the country. He has also done his own will available for free on his website as a template. He believes that 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 do not want the person to support more treatment, but because they cannot take care of the patient at home, they keep them in the hospital. Doctors, forced by medical ethics, cannot retain The treatment, so the patient ends up suffering without expressing his wishes, “says Datar.

Living wills are not just about choosing passive euthanasia. Dr. Yadev recalls a case in which a person wanted his will to specify that he should be put on a vital support if his condition once required.

“He explained that his only son lived abroad and that he didn’t want to die until his son met him,” says Yadev. “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.

Health defenders say that conversations about palliative care are growing slowly in the country, giving an impulse to living wills.

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

“Throughout our lives, our choices are colored by the wishes of our loved ones or by what society believes that it is correct,” says Yadev.

“At least in death, let’s make decisions that are our interest and that are totally in ours.”