A terminally ill 16-year old is competent enough to decide on whether to continue further treatment or allow nature to take its own course, according to a draft of the Medical Treatment of Terminally Ill Patients (Protection of Patients and Medical Practitioners) Bill.

Terminal illness entails illness or injury that causes extreme pain or suffering to the patient, and which according to reasonable medical advice will eventually cause the death of the patient. In such cases, medical treatment only serves to prolong the process of dying.

As per the Bill, a competent person who can make an informed decision about his or her medical treatment, and is able to communicate it effectively, can decide on withdrawing or withholding treatment. The decision is binding on the treating doctor provided the doctor feels the terminally ill patient is making an informed choice, and after the patient has communicated the same to his/her spouse and parents.

The government has sought comments and opinions on the Bill so that it can make an informed choice on its enactment.

While the Bill only portends to legalise what is called “passive euthanasia”, as discussed in the judgement pertaining to nurse Aruna Shanbaug. A nurse at KEM Hospital in Mumbai, Shanbaug was raped and strangulated, leaving her in a vegetative state for decades till her “next friend”, author Pinky Virani (who wrote a book on her) filed a case to allow her to be euthanised.

Not just a number

While many treating doctors feel age is not a contentious issue, child rights activists are shocked. The activists have been advocating consistency in the age limits in the country's laws. The Juvenile Justice Act recently allowed children between 16 to 18 years to be tried as adults in cases of heinous offences.

European countries such as Belgium and Netherlands have legalised active euthanasia, where the terminally ill patient is euthanised through specific steps such as injecting a poisonous substance. Belgium extends the right to active euthanasia for all age groups, while Netherlands extends it to anyone above 12 years of age.

The issue that has been discussed most in the Indian context has been the maturity of a child. “This is ridiculous," said Enakshi Ganguly of the Haq Centre for Child Rights in Delhi. "We cannot sign a contract or marry before the age of 18, but you can decide to die? How can we allow a child to decide something as important as life and death?”

Eighteen is the age of consent for medical treatment – for surgical treatment or administration of medicine – as stipulated by the Indian Contract Act, said Mrinal Satish, associate professor at National Law University in Delhi. “We need to have consistency in our laws related to the age of a major."

Considered decision

Another related issue is that terminal illness could be reversible.

“While I do not want to get into whether a child is mature or not, I feel medically there is always a question of reversibility in case of a young person," said an end-of-life care specialist, on the condition of anonymity, who works at a tertiary care hospital in Mumbai. "The likelihood is much higher in younger people. You don’t want to take a decision on withdrawing or withholding support that early."

Pediatrician Dr Vandana Prasad, a former member of the National Commission for Protection of Child Rights, felt that while a person who is 16 may be able to make decisions, there have to be more mechanisms in place to ensure that it is done with much thought and deliberation.

“A young person is impressionable," said Dr Prasad. "I am too scared for vulnerabilities of young children. In terminal cases, costs can become a constraint. If treatment is free, the parents would possibly continue with treatment, because who wants to give away the life of a child? The child may feel that he is too much of a burden and take a decision."

Autonomy and suffering

As per the Bill, while a competent terminally ill patient can make decisions on further treatment, the decision still rests with the doctor. The Bill lays a caveat that the medical practitioner has to be satisfied that the patient is competent and is taking the decision based on his free will.

“The medical practitioner can interpret this section subjectively and say that the decision is not important," said Dr RR Kishore, President, Indian Society for Health Laws and Ethics that works on providing a framework for laws related to medicine. "This gives too much discretion to the doctor and is a violation of patient autonomy. Doctors who are scared of withdrawing life support would take shelter in this provision and say I am not satisfied."

While the Bill does talk of providing palliative care for terminally ill patients, irrespective of the decision taken, the facilities for such care in the country are inadequate. “Only Kerala has any semblance of palliative care," said Sunita Bandewar, a medical anthropologist based in Pune. "In other states, there are isolated centres that offer palliative care. A patient not receiving any treatment would be in pain before he or she dies. There needs to be more discussion on this front.”

'Impractical legislation'

Many doctors and experts feel that the draft Bill is a colossal disappointment. The Bill states that a living will or an advance living directive, wherein a person can provide instructions on his or her future in the case of terminal illness, is not tenable under the law.

In addition, if the person is incompetent, that is either younger than 16, or of unsound mind, or unconscious, the family who wants to withdraw or withhold treatment will have to move the high court. With about 3.86 million cases already pending in the high courts, does it make sense to further burden them, they ask.

“The Bill stipulates a time limit of one month to decide the case," said Bandewar. "Why should a patient suffer for a month? In these circumstances, why would the patient’s family move the court?”

Dr RK Mani of the Indian Society of Critical Care Medicine, who works at Delhi’s Saket City Hospital, feels that only a miniscule minority of patients are able to decide and communicate a wish to withdraw treatment, and most terminally ill patients lose their capacity to communicate and participate in decision making.

A terminally ill patient's family has to incur substantial financial costs too. Dr Mani referred to a recent case where a terminally ill cancer patient was being pushed to take ventilator support, which he felt was futile.

“During the final stages, imposing futile burdens upon the patient or the family is no longer regarded to be in the patient’s best interests by medical opinion around the world," said Dr Mani. "Currently, 70-90% of all deaths in intensive care units in the developed world is through withdrawal and withholding decisions when medical interventions are deemed futile.”

Dead letter

Some doctors also took objection to the term "passive euthanasia", which according to them has been abandoned by modern medicine.

“This has to be decided at the hospital level," said Dr Nagesh Simha from the Indian Association of Palliative Medicine. "One can have a panel in each hospital that looks at this. Taking this to court is idiotic. If the living will is given legality, it will give strength to the doctors to act in the best interest of the patient."

Having a framework that necessitates a court order is a dead letter, said experts. The Aruna Shanbaug judgement also speaks of moving the high court, which has not turned out well in practice. “I have heard that many hospitals have been proposing that terminal patients leave the hospital, purportedly against medical advice, and then remove life support," said Dr Simha. "That rules out any kind of palliative care which could ease the patient's suffering".

Making the case for how such a legal framework will not work, the end-of-life care specialist from Mumbai said, “Aruna Shanbaug’s case produced a judgement on guidelines to passive euthanasia. But she died in the Intensive Care Unit. Did anyone inform the court? No.”