The right to die with dignity is legal. Then why are there such few takers?

Last month, Dr Rajani Surendar Bhat, a Bengaluru-based pulmonologist and palliative medicine doctor, met with a harried man. His 80-year-old father had been suffering from dementia and Parkinson’s for some years. Repeated infections meant he had been hospitalised four times in six months. “He had been dragged from one hospital to another after every infection. He would be treated and then fall sick again,” Bhat says. The family did not want the octogenarian to suffer more. “No hospital or doctor had bothered to talk to them about comfort care as an option,” she says, referring to the care given to those at the end of their lives.Bhat explained to the family that they were empowered to opt for withholding or withdrawing care in a terminally ill patient, after which the family took a collective decision. She also prescribed medicines to ease his pain and breathlessness. “He spent time at home with his family and died peacefully with memories of everyone around him,” she says. Why few opt for end of life careThe patient’s experience is a rare one. Six years after the Supreme Court issued guidelines that legally allow a patient or caregivers to withdraw life support in terminally ill cases, few have opted for this. Lack of trust in the healthcare system, the lack of concrete guidelines until recently and low awareness even within the medical fraternity has made end-of-life-care (EOLC) harder to access.Active euthanasia, which is the intentional act of killing a terminally ill patient on voluntary request, through direct intervention by the doctor — such as by injecting a lethal drug — continues to be illegal in India. While hearing the historic Aruna Shanbaug case in 2011, the Supreme Court allowed passive euthanasia in India but under strict court directives. In response to a petition by Mumbai-based Indian Society of Critical Care Medicine, the court gave its nod for Advance Medical Directives (AMD) and withdrawal or withholding of life-sustaining treatments in 2018. AMDs or living wills allow patients agency in determining how they wish to be treated if they are incapacitated. They can confer decision-making power onto a family member or decide when medical treatment should be withdrawn or withheld.The pain of endless medical treatments convinced former zoology professor N N Gokuldas to sign an AMD. Within two years of his cancer diagnosis, he was told that he could not survive further aggressive treatment. The 74-year-old is determined not to put himself through the process of chemotherapy and radiation again. “I did not consult my family when I made the decision. I have the right to die peacefully.” medium114172558 Part of the reason others have not followed suit is a lack of awareness, say experts. With advances in modern medicine, it is possible to prolong life, but that does not mean life must be extended at all costs in every case, experts argue. Dr E Divakaran, director at the Pain and Palliative Care Society in Kerala’s Thrissur, describes this as the absence of “death literacy,” an understanding of end-of-life-care. He says, “Appropriate medical practice is to balance treatment with benefits. What we advocate is limiting futile treatment that is risky and without benefit for patients and caregivers.”The centre has convinced 40 people so far to sign AMDs in the last few months. Divakaran says that while people are wary about terms like passive euthanasia, they’re more receptive when spoken to about comfort care. Doctors say nomenclature makes a difference — instead of terms like ‘passive euthanasia’ or ‘withdrawing life support,’ which can be misleading, they feel that it would be more accurate to say “withdrawal of organ support” if further medical intervention cannot assure decent quality of life and if the risk is greater than the benefits.Legal hurdlesThe 2018 judgment had laid down a three-level system of oversight — an internal medical board for a preliminary opinion, followed by the decision of a review board constituted by a district collector, and a final physical verification by a judicial magistrate. But the process proved to be too complex, and the court simplified it in January 2023, by removing clauses that mandated permission by a judicial magistrate and the requirement of a district collector on the review board. Vidhi Centre for Legal Policy co-founder and lawyer Dhvani Mehta, who has been involved in the EOLC policymaking process, points out that there was no effort from the government to operationalise these guidelines, until recently, when the central government took the first concrete step by bringing in draft guidelines to implement the Supreme Court directive. Nor have there been qualitative measures to train doctors to tackle complex decisions like withdrawing support and communicating options to patients.Following by exampleTypically, after a patient spends lengthy periods in the ICU without any hope for recovery, the hospital says they cannot do more for him. Often the patient is discharged and dies either in the ambulance or at home. The trauma of the death gets pushed on the family or caregiver.Dr IP Yadev, a surgeon based in Kerala’s Kollam district, had a similar experience with his father who suffered a stroke in 2010 and has agonised over his decision over the years. “My father told me he did not want to be on the ventilator or in the ICU. But I ignored his wishes, thinking I was doing the best for him. He wanted to be with his family. Instead, he died alone in a hospital room. I decided that I will not go through that or allow the rest of my family to suffer like that,” he says.In 2022, he was posted to the Kollam Government Medical College and Hospital and helped establish the palliative care department. To convince his extended family, he made videos, distributed explainers, had conversations with 100 family members to explain the concept of a living will and end of care support. “In August, we all met for Onam celebrations and 60 of the 100 people signed AMDs. I was very happy that they were convinced,” Yadev says.