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.
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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 cold ICU alone, without loved ones. But people may not be in a mental or physical 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 life-support by writing a living will. The apex court upheld the fundamental right to die peacefully and with dignity. The landmark judgment was made on a public interest litigation filed by a Delhi-based non-governmental organisation. The court stipulated strict conditions for the execution of the ‘living will’, including the establishment of two medical boards and certification by a judicial magistrate. But 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.”
This doesn’t mean the patient should not receive treatment after signing the ‘living will’. Palliative surgery or chemotherapies can be employed to reduce pain and make it easier on the patient, Prof. Gokul Das, a founding member of the Pain and Palliative Care Society, Thrissur, said.
People are generally scared of discussing their “inevitable” death. It’s always a “taboo subject.” However, unofficial gatherings like ‘Death Café’, a popular movement in the West, 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 were over 50, young people did also sign up.
38-year-old Sini. C.S., a nurse at the Pain and Palliative Care Society, 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 external compulsion.
The signing of the will must be witnessed by two people and should further 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 self-government 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 for society. “After we signed the document, at least 60 people from across the country contacted us to learn about the procedures. Those who want to sign the document think that dying with dignity is as important as living with dignity,” Prof. Gokul Das said.
