A living will, so the terminally ill can avoid the indignities of prolonged hospital care

On March 12, a gathering of 30 people, mostly doctors, nurses, and volunteers of the Pain and Palliative Care Society, signed ‘living wills’ in Thrissur, Kerala. A ‘living will’ is a legal document prepared in advance, detailing your preferences for medical care or for the termination of medical support in circumstances in which you are no longer able to make those decisions for yourself.

“Everybody wants to die with dignity. No one wants to die in the freezing ICU alone, without loved ones. But people may not be in a condition to articulate their wishes in their last days. Patients, even in the eventuality of terminal illness with no hope of recovery or irreversible coma, are often kept on life support just to delay death — perhaps under social or family pressure. These expensive treatments push many families into a huge debt trap,” says Divakaran Edasseri, Director of the Institute of Palliative Care, Thrissur.

The Supreme Court ruled on March 9, 2018, that in specific conditions, a person has the right to decide against artificial lifesupport by writing a living will. It upheld the fundamental right to die peacefully and with dignity. The judgment was made on a PIL filed by a Delhibased NGO. The court stipulated strict conditions. In January 2023, the court modified guidelines for its 2018 order and made it simpler. The objective of the ‘group signing’ was to create awareness and ease confusion about the living will. “We want to tell society that the procedure is simple and workable,” said N. N. Gokul Das, a retired zoology professor, Sreekrishna College, Guruvayur.

Dying with dignity

“I am a survivor of colorectal cancer. At 75, I can make a decision that I want only palliative care, not any curative treatment, in case of a relapse. I don’t want to suffer in the ICU. I don’t want a nasogastric tube to be inserted for feeding. I want to die a comfortable death, with dignity. Why should we add a financial burden to our family? Death is a big business now,” he said.

This does not mean the patient should not receive treatment after signing the living will. Palliative surgery or chemotherapy can be employed to reduce pain, Mr. Das, a founding member of the Pain and Palliative Care Society, Thrissur, said.

People are generally scared of discussing their “inevitable” death. However, unofficial gatherings like Death Café, where people meet and discuss death over a cup of tea and a piece of cake, have become common in cities in the country. “We conducted Death Café sessions in the Thrissur Pain and Palliative Care Society. It was an enriching experience,” said Dr. Divakaran.

And what was the age profile of those who signed the will? Though most participants were over 50, young people did also sign up.

A 38yearold nurse at the Pain and Palliative Care Society, Sini. C.S. was among those who signed the will. “I have witnessed the final days of terminally ill patients for 10 years. I have seen how patients and families suffer. I feel it is meaningless to delay death if there is no hope of recovery,” she said.

The modified guidelines

According to the modified guidelines, to make a living will, one must be of legal age and sound mind. The person must be aware of the conditions in which curative treatments and life support systems will be halted. The decision to prepare a living will must be taken without any compulsion.

The signing of the will must be witnessed by two people and should be attested by a gazetted officer or a notary. A copy must be handed over to the doctor and an assigned person (a close relative or friend). Copies of the living will should also be sent to the secretary of the local selfgovernment and the district magistrate.

P.V. Ajayan, ENT Professor, Government Medical College, Thrissur, who organised the living will event, hoped that the programme would be a positive message. “After we signed , at least 60 people contacted us . Those who want to sign the document think that dying with dignity is as important as living with dignity,” Mr. Das said. (mini.mk@thehindu.co.in)