Top India court allows passive euthanasia, but few aware of ‘living wills’ 

New Delhi, India – In a crowded ward of New Delhi’s All India Institute of Medical Sciences (AIIMS), India’s premier public hospital, a mother sits quietly beside her 29-year-old son, Piyush Singh*.

Diagnosed with stomach cancer a year ago, Singh has already undergone five rounds of chemotherapy. He now lies in the hospital’s palliative care unit, where the goal is no longer to cure the disease but to relieve pain and preserve his dignity.

“The world comes to AIIMS when they are not well. But where shall we go?” asks his mother. “My son has already received five doses of chemotherapy, but his condition has not improved. The doctors are not telling us anything. I don’t know what to do next.”

Piyush’s family is not asking for his life to end. They simply don’t know what comes when treatment fails.

A few floors away, Aryan* has come to AIIMS from Auraiya, a small town in Uttar Pradesh state, to accompany his 40-year-old brother Amit (name changed), who has been battling mouth cancer for four years. Two surgeries, radiation and two rounds of chemotherapy later, doctors say there is little hope of him surviving. The final checkup has been done. There is nothing more left to try.

“There is no duvidha [dilemma in Hindi],” says Aryan. “The doctors have said no. So it is clear now.”

He plans to take Amit to his rented flat in Gurgaon and give him whatever painkillers he has been prescribed. Beyond that, he has no plan, because no one has given him one.

“I don’t know about palliative care. I don’t know how to ease his pain. I have nothing apart from the medicines I got today,” he said.

Piyush and Amit are no exceptions. They represent a reality that many Indians are coming to terms with – with little institutional help.

India recorded an estimated 1.56 million new cancer cases in 2024, according to an Indian Council of Medical Research study published in the Journal of the American Medical Association. But cancer patients are not alone. Families of patients with traumatic brain injuries and degenerative neurological conditions also hit the same wall.

According to a 2025 analysis by ecancermedicalscience, an open-access medical journal, an estimated seven to 10 million people require palliative care in India, but only about 4 percent receive it.

Such families find themselves with little or no awareness or preparedness for what comes next. Many have never heard of palliative care, or that the law gives them the right to document their treatment preferences before a crisis arrives.

The problem is also rooted in how many Indians confront death – a phenomenon that is one of the least-discussed subjects within families or societies. In many households, conversations about dying are considered inauspicious.

In such a worldview, to think of interventions in how or when someone dies carries a moral weight that goes beyond medicine or law. Families often avoid discussing medical wishes until a loved one is critically ill, leaving relatives to make deeply personal decisions during moments of grief and uncertainty.

From caregiving to court

The answers are increasingly being shaped not just by medicine, but also by the law.

In 2018, India’s Supreme Court recognised that the “right to die with dignity” was part of the fundamental right to life, enshrined in Article 21 of the Indian Constitution.

The court also allowed such patients to record their wishes about life-sustaining treatment if they lose the capacity to decide in an advanced stage of their ailment.

The top court’s ruling was in response to a petition filed by Common Cause, an NGO, which called for legal procedures allowing terminally ill individuals to execute Advance Medical Directives, commonly known as “living wills”, to refuse life-prolonging medical treatment.

A living will is a legal document that highlights an individual’s preferences for medical treatment when they cannot voice their choices. The provision allows them to nominate a loved one to decide for them.

“It [judgement] broadens the scope of Article 21. It now affirms, kind of completely, that the right to life includes the right to die with dignity. That is the bottom line for us,” Vipul Mudgal, director of Common Cause, the organisation behind the 2005 petition, told Al Jazeera.

Yet, for most Indians, that right largely existed on paper – until six years later.

In 2024, a family in Ghaziabad, an industrial district on the outskirts of New Delhi, filed a petition in the Delhi High Court and later in the Supreme Court, asking for a decision on the fate of a 32-year-old patient who was in a vegetative state for nearly 13 years.

Harish Rana’s case was a first in India where passive euthanasia, or withdrawal of life support, was permitted by the top court. On March 11, the Supreme Court directed the withdrawal of his life support at AIIMS, New Delhi. He passed away two weeks later.

But the journey from caregiving to courtroom was not easy.

Rana’s family managed his feeding tube, tracheostomy and urine bag every day for 13 years, and it had drained them.

“A family reaches such a decision when it sees no scope for improvement. Harish Rana could not speak, we were his voice,” Rana’s father Ashok told Al Jazeera. “He was not in that state for 13 days or 13 months, but for 13 years.”

All those years, said Ashok, he watched his son breathe but not recover, with only one question on his mind: “I am around 63 years old, and my wife is 58 years old. If something happens to either of us, who would take care of him?”

That is when they decided to approach the court.

While the Rana case is a landmark, experts say it is unlikely to set an immediate precedent in a country where death is an uncomfortable topic. That is why, despite being legalised in 2018, living wills remain uncommon and largely unheard of.

As a result, terminally ill patients do not discuss their wishes while they still can, and families end up making decisions for them without preparation or guidance.

A 2019 survey across seven cities, including New Delhi, Mumbai and Kolkata, by Healthcare at Home (HCAH), a health advocacy group, found that 73 percent of urban Indians were unaware of their right to a living will. Even among people aware of their right, only 6 percent had actually drafted such a will.

“The Harish Rana case was made more complex because there was no living will,” said Manish Jain, the lawyer who represented the family in court. “Living will clinics are absent across India.”

There are only two such clinics in India. The first opened in Mumbai last year, followed by one in New Delhi – both operated by private hospitals, which are beyond the reach of most Indians.

Fears of misuse of living wills

Concerned over a likely misuse of living wills, the Supreme Court made its guidelines complex. However, in the process, the court ended up making it difficult to navigate for most people.

To make a living will legally valid, an individual would sign it before two witnesses and get it countersigned by a magistrate. If the patient later became terminally ill, the treating doctor would be required to form a board of specialists with at least 20 years of experience each, whose findings then had to go to a district magistrate, who would form a second medical board. Only after both boards agreed could the process move forward, and any disagreement meant the matter went to the regional High Court.

In 2019, the Indian Society for Critical Care Medicine, a nonprofit group of physicians, approached the Supreme Court, arguing its guidelines were unworkable. In 2023, a five-judge top court bench simplified the process, removing the requirement of a magistrate’s countersignature, reducing the minimum medical experience requirement for review boards from 20 years to five, and allowing multiple nominees instead of one.

“Decisions are being made every day, sometimes by the family members, sometimes by the doctors, sometimes because of paucity of money,” said Mudgal.

He said if the families, doctors and courts can make end-of-life decisions for an individual, why cannot the individuals make those decisions for themselves? This recognition, while respecting individual autonomy, also relieves family members from the guilt of deciding for their loved one, he added.

“If there is no meaning left in life, somebody is kept alive artificially, just beating the heart with some mechanical device, that life has no meaning,” he said.

Yet, such questions remain unanswered by law. Living wills and the right to die exist entirely through judicial interpretation. There is no parliamentary law governing the same.

“There is no framework [of parliamentary law] passed by the parliament,” Jain said. “The Supreme Court of India itself requested the government to pass legislation regarding this issue,” he added, first in 2018 and again in 2023.

But lack of a law is only one part of the challenge.

For families, the absence of palliative care means little or no guidance on what comes after treatment options run out. Even families like Piyush’s, who have access to palliative care, don’t know what comes next.

“There are many patients like this who don’t have legal awareness of passive euthanasia. Not only patients, but their doctors also do not have full awareness about palliative care,” Dr Saipriya Tewari, principal consultant and unit head of pain management and palliative care at Max Super Speciality Hospital in New Delhi, told Al Jazeera.

She said families often look confused when told there is no treatment left, and that they should take the patient home.

“What will they do after taking the patient home? Nobody tells them. It is only discussed if the palliative care doctor is involved in the treatment,” Tewari said. “And even if the end is coming, then how do we maintain dignity in time? That is the question.”

Piyush’s mother has a different question.

“If he is sick, then we have to get treatment. We have to do something to keep him alive. What should we do? We are not able to think of a way out of this. Nobody is giving us any suggestions about where to go.”

*Names changed to protect the identity of the patients and their families.