In 2018, soon after the Supreme Court recognised the right to die in case of terminal illness, Delhi-based intensivist Dr Raj Mani began exploring ways to help his patients.
One of his patients was a 70-year-old man who had developed multiple infections after a heart valve surgery. He was put on life support and needed regular dialysis. The family was paying nearly
Rs 1 lakh a day on treatment and the patient had been in intensive care support for three weeks, even though it was clear to doctors that he would not recover.
The family wanted to put an end to the patient’s suffering. But this was easier said than done.
The Supreme Court judgement had set up a three-tiered approval process for passive euthanasia.
First, the hospital has to set up a medical board once a physician confirms that the patient is at a point of no return.
The board gives its opinion and the case is forwarded to the district collector, who forms a second medical board for review. In the third and final stage, a magistrate verifies and gives permission to withdraw life support, end treatment or not initiate life support at all.
But, as Mani soon realised, barring the first step, patients were likely to hit a wall. District collectors were unaware of the apex court judgement as were local magistrates who had the power to approve withdrawal or withholding of life support.
“It would also be emotionally distressing to send them to court for permission,” Mani said. He consulted the family and they agreed on the way out: they signed consent forms that allowed Mani to switch off the dialysis machine and end the patient’s suffering.
Legally, Mani knows his decision falls in a grey area since he or the family did not seek approval from the courts. “Ethically, it was the correct decision,” he said.
This is not the experience of one family alone. A complicated system of approvals and red tape is strangling the “right to die” granted to Indian citizens by the Supreme Court in 2018.
“The process is too legalised,” said Mani, who is also a member of Indian Society of Critical Care Medicine. “There is no human touch. Such a procedure does not exist anywhere in the world. Can you expect a family to go to court when their loved one is in the intensive care unit?”
The Indian Society of Critical Care Medicine approached the top court in 2019, stating that the present set of guidelines was not viable. Mani said that since the 2018 ruling, they have not come across a single case where families with terminally ill relatives in hospital could find a judicial magistrate willing to grant approval for passive euthanasia.
Five years after the landmark judgement, a five-judge Supreme Court bench headed by Justice KM Joseph is now hearing arguments to simplify the process. The petitioners have requested the court to remove a magistrate’s approval from the list of requirements and ease the process for doctors and patient’s family.
The court has, in turn, expressed its concerns over the potential misuse of a simplified procedure, where a patient who is not in an end-of-life stage, could be labelled one by unscrupulous family members or doctors. The next hearing in the case is on Tuesday.
The living will
The 2018 verdict was not only concerned about patients in incurable or comatose states. It also carved out a space for a “living will” or an advanced directive, which gives a person freedom to choose how he or she dies under certain medical conditions.
Under this, a person can specify the kind of treatment they would want if they suffer any terminal illness, or slip into a vegetative state or have to be put on life support system and cannot communicate their decision. The recognition of passive euthanasia by the apex court implies that doctors can withhold or withdraw treatment from such patients after following due protocol.
In Ghaziabad, 24-year-old Keshav Anand, a software engineer, read about the Supreme Court judgement in 2020. “If I ever land in a coma, I do not want any life support,” he said. “That is why I decided to make an advanced directive.”
In September 2021, he visited the Ghaziabad magistrate court. “But nobody knew anything about an advanced directive,” he said.
He contacted several non-governmental organisations working in the field. “Eventually a lawyer told me to carry the judgement copy to the court,” he said. He went back to the court, wrote an application, submitted the copy of the judgement. The judge asked for some time to read it.
A month later, Anand went back to the court to get an update. “The judge asked me to bring along a lawyer this time,” he said. After multiple visits, in March 2022, Anand’s advanced directive became a legal document. Both his parents were witnesses. He is, perhaps, among the youngest Indians to make one.
Advocate Dhvani Mehta, from Vidhi Centre for Legal Policy, said cases like Anand’s are rare.
“Most people, including my aunt, were unsuccessful,” she said.
Her aunt, Mumbai-based Dr Lopa Mehta, who works with the humanities department at King Edward Memorial or KEM Hospital, decided to make an advanced directive for herself.
Mehta, aged 78, wrote a simple, pointed application – she would prefer home-based care to hospitalisation and would only get admitted in a public hospital, not private, if the need arises. She explained the kind of treatment she would want if she was bed-bound. “I worked in KEM since 1963,” she said. “I would want to be admitted there.”
The 2018 Supreme Court verdict had stated that a first-class judicial magistrate has to approve the advanced directive in the presence of two witnesses.
Mehta’s brother took her to a magistrate court in Mumbai. “But the court was not aware of such a judgement,” she said. She gave up when she realised the process was cumbersome and that lower courts had no knowledge and no inclination to proactively authorise such directives.
‘A non-workable process’
Just making an advanced will is also often not enough. In both cases, whether involving individuals who have made a “living will” and those who wish to end their relatives’ pain after medical approval, the cumbersome three-tiered approval process kicks in.
If the family or individual disagrees with the medical board or magistrate’s decision, they can approach the high court.
Maimoona Badsha, legal counsel for Apollo Hospitals, said this has proven to be “a non-workable process”.
Four years ago, for instance, Bengaluru-based critical care specialist Dr Nagesh Simha advised Karunashraya Hospice, a centre for cancer care that receives numerous requests for stopping treatment of terminally ill patients, to contact the local magistrate. “Again, the magistrate was unaware of the judgement,” Simha said.
Doctors said withdrawing or withholding life support becomes an option when a patient is brain dead, or is in a persistent vegetative state like the case of the nurse Aruna Shanbaug, who spent four decades in a state of unresponsiveness after a brutal sexual assault, or suffers from a terminal illness where further treatment will only cause more pain and not improve their health.
“In such a situation, we counsel the family that the best approach is palliative care if, say, the patient wants to stop cancer treatment. In cases of brain death, it is a shared decision with the family to stop life support,” said Dr Roop Gursahani, neurologist in PD Hinduja hospital in Mumbai.
But such decisions can be mentally taxing for the family, and expecting them to wait for the magistrate’s approval while the hospital bill steadily soars is unethical, Gursahani added.
For this reason, several intensivists said they do not advise the family to approach the court.
How hospitals deal with cases
In 2018, the Supreme Court introduced checks and balances to ensure doctors do not accept bribes in exchange of declaring a person brain dead and to prevent families from getting rid of a relative for their vested interest.
But since the legal procedure is tedious, Simha said some hospitals discharge patients and allow them to die at home to avoid legal hassles.
“In some cases, the patient is taken in an ambulance to a road outside the hospital and the life support is stopped,” Simha said. “Once the patient dies, the ambulance comes back to the casualty department where the doctor declares the patient brought dead. All this causes suffering to a patient.”
Gursahani added that continued life support in cases of brain death also adds to the cost of treatment. “It is like treating a dead person,” he said.
After the Supreme Court judgment, several hospitals went on to frame their own policy on passive euthanasia.
At the All India Institute of Medical Sciences, New Delhi, 15 senior doctors prepared a 12-page policy on end-of-life care in 2020 that does not involve approaching a magistrate.
Dr Sushma Bhatnagar, head of palliative care department, said the policy lays stress on “good death”. Once a physician says that a patient may not recover with treatment, two more physicians from the hospital reassess the opinion and confirm it.
“Once they do so, we counsel the family,” Bhatnagar said. The process sometimes requires two to three meetings with the family, she added. In Apollo Hospitals, too, a policy has been framed to tackle such cases.
“If they give consent, we stop or withdraw treatment,” said Bhatnagar. “If they refuse, we continue treatment. But at no point do we desert the patient.”
When it comes to children
In Mumbai, Bai Jerbai Wadia Hospital tackles complicated cases of children referred from across the state. Its chief executive officer Dr Minnie Bodhanwala said there is a need for national guidelines on end-of-life care in children too. “Current legal provisions for limiting futile life-sustaining measures are not practical,” she said.
The hospital is in the process of framing its policy for children with terminal illnesses. “Even after the policy is framed, we need legal backing,” said Dr Shakuntala Prabhu, medical director of the hospital. “Currently, there is no legal validation to withdraw or withhold support from such children.” The 2018 judgement, she said, focusses on advance directive for adults. “There is limited scope for it to apply to children,” she said.
The hospital currently follows a 2020 “Do not attempt resuscitation” guideline framed by the Indian Council of Medical Research, said the hospital’s paediatric palliative care head, Dr Veronique Dinand. This guideline is limited to terminal illnesses, it does not deal with withdrawing or withholding support for cases like congenital birth defects, where transplant of organ is not a solution, or in multi-organ failure where doctors label the case as “medical futility”.
“Of the children who die in our hospital, 5%-7% of children need palliative supportive care where there is a dilemma about the treatment,” said Prabhu. The hospital is the first in India to open a palliative care department for children, and the team manages 40-50 such children every month.
The hospital’s doctors are eagerly awaiting the Supreme Court’s decision. “We have given our suggestions to the advocates representing the case,” Prabhu said. “We are hopeful that the process addresses concerns about paediatric cases too.”
This reporting was supported by a grant from the Thakur Family Foundation. Thakur Family Foundation has not exercised any editorial control over the contents of this article.