How a ‘Living Will’ can help you die with dignity
——————- This article was first published in moneycontrol.com on MAY 30, 2023, authored by Mr. Shailendra Dubey, Partner, PlanMyEstate.
Living wills, also known as advance medical directives, are legal documents that allow individuals to specify their preferences for medical treatment in the event they become incapacitated and are unable to communicate their wishes.
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“The right to live with dignity includes the right to die with dignity, under Article 21. Why should I be kept in misery and dragged on if I am terminally ill and have become virtually a vegetable,” said Professor DN Jauhar, after registering his Living Will. Jauhar, along with his wife, Professor Adarsh Jauhar, residents of Chandigarh, claim to be the first people in the country to have executed and registered living wills, in December 2019.
Living wills, also known as advance medical directives, are legal documents that allow individuals to specify their preferences for medical treatment in the event they become incapacitated and are unable to communicate their wishes. Living wills not only give control to an individual on how he or she should be treated in case of incapacitation, but also give clarity to family members who would otherwise have to make difficult decisions on medical care and life support systems.
Aruna Ramchandra Shanbaug, a junior nurse in KEM Hospital in Mumbai, was sexually assaulted by a ward boy in 1973. She went into a vegetative state after the assault and was kept on life support systems for nearly 42 years, till she died of pneumonia in May 2015. Though the Supreme Court (SC) rejected a plea by journalist Pinki Virani in March 2011 for Shanbaug to be euthanised, in its landmark opinion, the court recognised the need for passive euthanasia in India.
While passive euthanasia involves intentional withdrawal of life support systems and letting a person die, active euthanasia is deliberate administration of lethal drugs to end the life of terminally ill patients.
The Supreme Court, in a landmark judgment in 2018, accepted and recognised the “right to die with dignity” as part of the fundamental ‘Right to Life’ under Article 21 of the constitution. The court observed that every adult individual with the mental capacity to make an informed decision has the right to refuse medical treatment, and life support systems, by executing an advance medical directive or a living will. The apex court said that these advance medical directives can be applied only in specific cases, where a patient becomes terminally ill and is not able to convey that the treatment must stop.
In January 2023, a five-judge constitution bench of the Supreme Court headed by Justice KM Joseph modified and tried to simplify the 2018 guidelines for registration and enforcement of a living will as it was a cumbersome and time consuming process.
As per the new guidelines, a living will, after being duly signed and witnessed by two independent witnesses, needs to be attested by a notary or a gazetted officer instead of a judicial magistrate of first class as mandated earlier. Also, the document should clearly mention the name of the guardian or close relative who will be authorized to take the decision on withdrawal of medical treatment in case the maker of the Will is incapacitated.
Under the earlier guidelines, the treating hospital had to constitute a medical board of three expert doctors with minimum 20 years’ experience from the field of neurology, oncology, general medicine, psychiatry, cardiology or nephrology. Once the primary board certified that the patient was terminally ill and that the instructions from the living will could be carried out, the report would go to the district collector. The district collector would then constitute another secondary medical board comprising the chief district medical officer and three expert doctors from the fields mentioned above.
Today, under the revised guidelines, the minimum experience required for doctors in the medical board is five years with at least two doctors being subject experts. Both the primary and secondary medical board need to be constituted by the treating hospital. Further, both the boards have been advised to give their opinion within 48 hours of a case being referred to them. However, in case there is a difference of opinion between the two boards or both boards refuse permission, it is open to the patient’s next of kin to approach the High Court, which may form a fresh medical board.
Though there are clear benefits in writing a living will, let us also bear in mind that it is a sensitive subject and any misjudgement on the part of doctors or a conflicted decision by a relative could end the life of a person who could have been revived. Hence, there is a need for wider awareness, dialogue and active participation from society and various stakeholders to influence policymakers into framing strong but practical laws for execution and enforcement of living wills. While the judiciary has been issuing broad guidelines from time to time, the ball is now in the legislature’s court to enact a detailed law governing living wills.
This article was first published in moneycontrol.com on MAY 10, 2023 / 10:59 AM IST