In early March this year, 30 people in Thrissur in Kerala executed living wills. Living wills have been legal since 2018, when the Supreme Court of India created a process to allow terminally-ill patients, with no hope of a cure, to withhold or withdraw treatment and die with dignity. Since patients may not be able to communicate their wishes for a variety of reasons, including being unconscious or suffering from dementia, living wills allow them to make choices about future medical care. Six years after the judgment, however, the Court’s process is unavailable in most of India. Officials remain unlikely to implement the procedure without direct orders and guidance from State governments.
The Court’s procedure
When the Court created the process, it was unworkably complex. As the Court worried that “unscrupulous persons who wish to inherit or otherwise grab the property of the patient” might abuse the process, it created elaborate bureaucratic procedures as safeguards. One particular requirement — that living wills must be countersigned by a judicial magistrate — was too much of a burden. Predictably, few living wills were executed in the first five years after the judgment. In January 2023, the Court recognised that requiring a judge to countersign each living will ‘impaired, if not completely defeat’ the objective of its judgment, and streamlined the procedure.
Under the streamlined procedure, living wills have to be signed in the presence of two witnesses, attested before a notary or a gazetted officer, and handed over to a “competent officer” in the local government who will act as a custodian. If the patient becomes terminally ill and does not have decision-making capacity, the treating doctor is to authenticate the living will against the copy held with the custodian or against digital health records, if any. However, local governments have not generally designated custodians for living wills, nor are they likely to. In Maharashtra, a public interest litigation had to be filed in the High Court of Bombay, with the result that Maharashtra appointed 417 custodians across the State recently. As for digital health records, the National Health Authority is yet to produce a protocol that will allow living wills to be authenticated through digital health records.
Also read | Will make guidelines on living will more workable, no review: Supreme Court
Making a living will does not automatically imply that it will be given effect. The guidelines require that the decisions on withholding or withdrawing treatment are certified first by a primary medical board and then confirmed by a secondary medical board. The secondary board must have a doctor nominated by the chief medical officer. Practically, this means that hospitals cannot have secondary medical boards unless the chief medical officer has nominated a doctor in the hospital where you are a patient. As a consequence, terminally-ill patients — even those who have made living wills — may not be able to make critical decisions about medical care.
It is not difficult to imagine why this happened. Officials are discomfited, like many of us, by the subjects of death, mortality, and end-of-life care. The whole subject is strange and unfamiliar, the guidelines are sometimes ambiguous, and the stakes are high. For example, the Supreme Court requires the primary medical board, if the patient does not have a living will, to obtain the written consent of the ‘next of kin’ for withdrawing/withholding treatment.
Editorial | End-of-life decisions: On SC’s legal status to advance medical directives
But Indian law does not have a clear definition for ‘next of kin’. When family members disagree about the best course of action, the law does not provide a clear answer about whose decision finally governs. They are bound to argue in the absence of a clear legal commandment. Officials will not be eager to issue orders, at their own risk, for the implementation of a Supreme Court judgment on such a sensitive subject. They will want a direct order from their superiors and a detailed process created by the State government before proceeding. They do not seek discretion. They want to anchor the polity to a rock.
The road ahead for States
And, similarly, State governments are reluctant to wade in; the area is complex and requires attention from medical and legal experts. Last year, Haryana issued directions to civil surgeons across the State to follow the judgment but did not offer essential guidance or protocols on how to implement it. A more thorough approach is being followed in Odisha, where the State government has formed a committee of experts to consider detailed draft orders for implementing the judgment. More States, hopefully, will follow suit. The Central government can bridge the gap in expertise by developing and publishing model orders and protocols which can provide State governments the confidence and the guidance to effectively implement the judgment.
Six years after the Supreme Court declared that Indians have the right to die with dignity, our governments have failed to take basic steps to implement it. Until they implement the judgment, doctors will remain worried about the consequences of giving effect to their patients’ express wishes. To quote a survey in 2023 of intensive care doctors, “[t]here is a general belief that [end-of-life] decisions are fraught with legal implications, and this becomes a major barrier to taking these decisions in the ICU.” Only effective guidance and persistent action at every level of government will give doctors the confidence they need to act in the patient’s best interests.
Nihal Sahu is a lawyer, writer, and Research Fellow at the Vidhi Centre for Legal Policy, New Delhi
