Living wills: If relatives can decide to withdraw medical treatment, why not patients themselves?

Radiation oncologist Dr Nagraj Huilgol drew up a “living will” several years ago to let his family, friends and doctors know that, if he ever becomes acutely unwell and unable to make decisions about his medical treatment, he does not want to be resuscitated or put on life support.

Living wills are advance directives by people who are mentally competent to family members and doctors about whether they should be given certain medical treatments in case they become terminally ill and unable to make decisions regarding treatment.

“We know that a living will is still not a legally valid document but the intent of writing it was to create awareness on the need to having one,” said Huilgol who is also the president of the Society for the Right to Die with Dignity.

Last week, the Supreme Court, continued hearing arguments on a petition filed in 2005 by non-governmental organisation Common Cause on legalising passive euthanasia and living wills. The courtseemed to favour allowing living wills to be considered as legal directives from patients to their caregivers in the interest of upholding the right to die with dignity. The government, however, argued against allowing living wills on grounds that they could be misused. The government only conceded that such documents may be one of many factors that a board of doctors might consider in allowing passive euthanasia.

Euthanasia may be active or passive. Active euthanasia involves giving a person a lethal substance to help end his or her life. It is illegal in India and amounts to murder. But passive euthanasia, as the government has pointed out, is already allowed and in practice.

In 2011, in the context of whether Aruna Shanbaug, the nurse who was had been in a vegetative state for four decades after a brutal attack, should be allowed to die, the Supreme Court’s said passive euthanasia – withdrawal of treatment and life-sustaining measures – may be allowed with certain legal safeguards. (Shanbaug died in May 2015 without active or passive assistance.)

The government is now finalising the Management of Patients With Terminal Illness – Withdrawal of Medical Life Support Bill that supports passive euthanasia.

The patient’s decision

Huilgol and other members of the Society for the Right to Die with Dignity feel that government’s stand on allowing passive euthanasia but not giving legal sanction to living wills is contradictory.

“In passive euthanasia, the relatives may decide on whether to withhold or withdraw treatment,” asked Huilgol. “Why does the government think that handing over the decision to the relatives is better than allowing the patient to decide what they want?”

“When the doctor tells the relatives of the patient that they should take the patient home as nothing more can be done is a form of passive euthanasia,” said Sharmila Ghuge, a law professor and author of Legalising Euthanasia: A Pedagogue’s Perspective.

Many Indian families continue to opt for inappropriate treatment as they cannot see themselves taking the decision to end the lives of their loved ones. Some, Ghuge said, continue to see withdrawing medical care as immoral.

“People fail to understand that passive euthanasia is not an act of killing but allowing the person to have a dignified death,” she said. “And having a living will make things easier, as doctors and relatives have to just follow the wishes of the patients.”

Pheroza Bilimoria agrees. Bilimoria’s father was hooked to a ventilator at a Mumbai hospital after he suffered a stroke and became unresponsive. Bilmoria and the other members of her family did not know what his last wish was and even considered setting up and intensive care unit in his house to keep him alive. However, after almost seven months, he died at the hospital.

“If there was anything like a living will then, we could have taken a conscious decision and saved him from the pain,” she said.

She established a palliative care facility called Palcare in Mumbai in 2013, after her husband died of lung cancer. “Everyone has a right to a dignified death,” she said. “No one wants to die with tubes down their throat.”

What doctors say

A living will or advance directive makes a physician’s job easier and safer, said Dr RR Kishore, an advocate at Supreme Court of India, president of the Indian Society for Health Laws and Ethics and a trained doctor.

Other groups of doctors, like the Indian Society of Critical Care Medicine, have come out in support of having living wills. “We undoubtedly support legalising living wills as it will help doctors to take informed decision in the care of the patient, as per the wishes laid down by the patient himself,” said Dr Kapil Zirpe who is a member of the society.

Living wills can help in preventing patients with chronic and painful illness being subject to aggressive treatments that do not help them recover or improve their quality of life. Some doctors even say that having living wills can help curb unethical continuation of treatments that may have little or no benefit to a patient but pad up hospital bills.

“We all know that at times commercial interests drive doctors to prolong death,” said Dr RK Mani, CEO of the Nayati Healthcare group of hospitals and chairman of a citizen’s group of doctors and lawyers called End of Life Care India Task Force.

Mani pointed out that countries like the United States have accepted living wills to protect the autonomy of patients. “Consent is mandatory before any medical care is administered to the patients,” he said. “The need for consent does not stop just because the patient is unconscious. In such situation, the living will comes into operation.”

The third benefit that doctors see for patients is that living wills that direct withdrawal of medical care can save poor families from economic ruin, especially in India where medical care is largely an out-of-pocket expense.

“We have families who sell everything they own to continue support to a patient who, we are sure, will not recover. In such cases, a living wills will save families from taking such tough decisions,” said Zirpe.

Enforcing a living will

Prashant Bhushan, the counsel of Common Cause, suggested in the Supreme Court that there be a medical board to examine the health of patients seeking passive euthanasia through living wills.

But that may be easier said than done.

“If the families and doctors have to go to medical boards, there will be an unnecessary delay which will add to the agony of the family and the patient,” said Zirpe.

Mani recommends that each hospital has a committee that can certify incurable and terminal illnesses to allow passive euthanasia and the execution of living wills. “These committees could have members from legal and social work backgrounds to guard against misuse,” he said.

Decisions not to prolong life during terminal illnesses may be rooted in several factors – futility arising out of the lack of a cure, avoidance of pain and agony, lack of money, preservation of self esteem and prevention of stress on family members. “Once we decide to legitimise the living will we, in fact, concede that it is entirely for the person concerned to take the decision irrespective of the reason.”