The right to refuse medical treatment

“The goal is not a good death; the goal is as good a life as possible all the way to the very end. And if we start thinking, well, good death is what we want, then you start euthanising people who have life to live,” says American doctor and author Atul Gawande, explaining his “complicated position” on euthanasia.

For years now, India has discussed euthanasia, a word with Greek origins that literally means “good death”. In a more common place sense, it is referred to as “mercy killing” where “the death of a terminally-ill patient is accelerated through active or passive means in order to relieve such (a) patient of pain or suffering.”

Earlier this month, the Health Ministry took a step towards a possible legislation by inviting comments on the Medical Treatment of Terminally Ill Patients (Protection of Patients and Medical Practitioners) Bill. The issue was earlier examined by the Ministry in 2006 based on a Law Commission report, but the exercise did not end in a law being enacted.

That changed in March 2011 with the Aruna Ramachandra Shanbaug case, the first in India to deliberate euthanasia. Aruna was in a “persistent vegetative state” for over three decades, cared for by staff at Mumbai’s KEM Hospital.

The Supreme Court directed here that comprehensive guidelines be implemented for passive euthanasia across the country, till the time a law is put in place by Parliament. And that time seems to have arrived, with the draft Bill that deals with “passive euthanasia” and a “living will”.

Making a distinction between active euthanasia (which is not allowed) and the passive approach, the Law Commission report refers to the apex court view “that in active euthanasia, something is done to end the patient’s life while in passive euthanasia, something is not done that would have preserved the patient’s life.”

But several doctors feel the draft needs more fine-tuning and clarity. There is an inherent contradiction in the Bill, people should be able to write a living will similar to a financial will, as is done in the US, says Dr Ravindra Ghooi, consultant in research at Cipla’s Palliative Care centre.

Section 3 of the Bill says that a patient can tell the doctor that he does not want treatment and the doctor has to comply it. But Section 11 says that an advance medical directive (a living will) from a person that he/she does not want treatment under certain conditions is not binding on the doctor. “The word and thought of the patient should be respected,” he says.

Sanjay Agarwala, Medical Director with the Hinduja Hospital, says, “the right to refuse medical treatment consistent with good end of medical life care by a medically competent person needs to be supported by suitable safeguards to prevent any misuse.”

The Bill needs to be crystal clear on where end of life care begins and when euthanasia comes in, says another doctor involved with palliative care that involves pain management. A diverse panel to discuss a euthanasia plea, and stringent rules regarding age, consent, etc., are some of the other interventions being discussed to keep out potential for misuse.

Doctors generally make a decision on passive euthanasia when a patient is on a downward slide, says Ghooi. Though every law can be misused, the important thing is to implement it well, he adds.

Passive euthanasia takes place all the time, he says, making a sweeping observation, but adds that it is not an easy decision for the family, doctors or judges.

It was a situation he was confronted with when his 83-year-old father had a heart attack and they did not go through with life support. Even his mother had decided to go through with just “comfort therapy” or pain management and not aggressively treat her cancer, he recalls.

Pain management too has improved, he says, clarifying on an earlier petition before the Supreme Court to make available morphine to manage pain in critically ill cases. Just months ago the apex court said that the petition was infructuous as States had changed their rules to make it available, he says.

The discussions are bound to get more emotive as many oppose the move as well, as was seen in the Terri Schiavo case (US) about 10 years ago or Dave Mullan’s plea in New Zealand this year. It is likely to be no different in India, as its citizens discuss a legislation that protects the right to refuse medical treatment.