On Aruna Shanbaug’s 69th birth anniversary, her friend Pinki Virani has a request for the Ministry of Health and Family Welfare: Name the new bill for terminally ill patients after Aruna, whose suffering ultimately resulted in the law.
The Medical Treatment of Terminally Ill Patients (Protection of Patients and Medical Practitioners) Bill – allowing terminally ill patients to choose passive euthanasia – has been put up on the ministry’s website for comments until June 19, 2016.
Virani, a social activist and author, has sent a section-by-section response to the ministry, along with the request to name the bill after her friend Aruna. Virani has also posted the response which is likely to be delivered on Wednesday.
“A woman who received no justice but who nevertheless left behind a gift for her country. (She was) a human who languished so long in Persistent Vegetative State (PVS), who (legally) died so broken – can her anguish at least be validated in her name as Aruna’s Act?” Virani argues in her response to the ministry.
Virani has sent a copy of her response to The News Minute, which she said could be quoted for the purpose of this story. She declined comment beyond that.
Since it was posted on the Ministry’s website on May 14, the Bill has received mixed reactions. Some have said that it needs to be streamlined on certain issues, but others have opposed it over apprehensions of misuse, especially since it allows persons aged 16 years and above to opt for passive euthanasia.
Virani also points out that wording of the bill with regard to the age of a minor is inconsistent with other laws. The Bill uses the phrase “minor below the age of 16 years or” but according to other laws, a minor is one under 18. She argues that such a clause pits a child against his/her parents at a deeply personal time.
She also objected to the provision mandating that each case be approved by the high courts.
“The choice to choose Passive Euthanasia – or not, because choice is part of the Law – is so deeply personal, so traumatic (and yet so guilt-releasing because it will free the loved one’s suffering) that a State must step back after systemising the Act. The choice can only be that of the patient (if lucid), legal family (spouse, parents, offspring if major) or next friend, in continuous conversation with their case-attending doctor,” she explains.
However, Anil Palleri, director of Indian Association of Palliative Care, feels that India is not ready for euthanasia at all. He warns that in a country where palliative medicine is still not at its full capacity, passive euthanasia may become the easy way out.
“When a person is terminally ill, the need is to reduce the person’s pain and not stop the treatment altogether. There are medicines and treatments that allow for that,” he says. “People may be forced to die if they do not get [financial] support. To prevent this from happening, we need full palliative coverage,” he insists.
But Akhila RS, a Madras High Court advocate, says that the lack of adequate palliative care could not infringe on the right to die with dignity. She said that while Article 21 of the constitution guarantees right to life, the Supreme Court interprets it as the right to live with dignity, which, according to her, makes the right to die an inalienably personal one too.
However, concerns have surfaced about the possibility of misused by relatives or doctors for personal gains.
“I understand that there are concerns of it (passive euthanasia) being misused, but I don’t think it is going to be rampant,” says Akhila. “Even in case of such parties colluding to coerce a person to choose passive euthanasia, I believe that the Bill has made available judicial overrides,” she adds, referring to the required approval by the high court.
Virani however, warns against judicial delays despite the one-month deadline. In her response to the ministry, she suggests that the high courts could be approached in cases where there was reason to believe that the best interests of the patients were not being served. This includes, among other recommendations, instances where there was disagreement among family members and doctors over allowing a person to die, and where there was disagreement over the diagnosis of PVS.
However, Akhila maintains that it is important to give the system a chance.
“I would not want to jump to conclusions and would rather wait and watch as to how this new Bill plays out. After all, the only way to stop abuse is through a judicial mechanism,” she maintains.