New Delhi: The draft guidelines proposed by the Centre for withdrawal of life support to terminally ill patients have been presented as groundwork ahead of larger directives to states on implementing the Supreme Court’s 2018 judgment on Advance Medical Directives (AMDs) and living wills, and withdrawal or withholding of life-sustaining treatments.
A living will is a legal document that specifies the types of medical care a patient wishes to receive if they are no longer able to make decisions due to a terminal illness or because of being permanently unconscious. Meanwhile, an AMD is not limited to terminal illnesses.
The draft norms on the withdrawal of life support, released last week by the Union Ministry of Health and Family Welfare to obtain public feedback by 20 October, define terminally ill patients as those in an irreversible or incurable condition, and for whom death is inevitable in the foreseeable future.
The latest draft advisory comes months after the health ministry released the first-ever guidelines on admission to intensive care units (ICUs).
“After we publish the final guidelines on withdrawal of life support to terminally ill patients, plans are afoot to send detailed directives to states on the effective implementation of AMD and withdrawal and withholding of life-support treatment or passive euthanasia,” a senior health ministry official told ThePrint.
The new draft norms, meanwhile, also include guidelines for patients with severe, devastating traumatic brain injury, who show no recovery post 72 hours or more.
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What ‘considered decision’ for terminally ill patients means
According to the draft norms, a “considered decision” must be taken in the best interest of such patients, to stop or discontinue ongoing life support that is no longer likely to benefit them but, instead, cause them harm by resulting in suffering and loss of dignity.
For such a considered decision, the draft norms say, certain conditions apply, including an individual being declared brain dead, medical prognostication (process of estimating and communicating what to expect for an individual’s disease course), and a considered opinion that the patient’s disease is in an advanced stage and they are not likely to benefit from aggressive therapeutic interventions.
The considered decision also emphasises the patient or their surrogate’s documented informed refusal—following prognostic awareness (patient’s understanding of their incurable disease and shortened life expectancy)—to continue life support. The decision must also be in compliance with the procedure prescribed by the Supreme Court on withdrawing or withholding life-sustaining treatments.
Many patients in the ICU are terminally ill, and not expected to benefit from life-sustaining treatments. These include mechanical ventilation, vasopressors (drugs that increase blood pressure by constricting blood vessels), dialysis, surgical procedures, transfusions, parenteral nutrition (intravenous feeding outside the digestive tract) or extracorporeal membrane oxygenation or ECMO (a machine that allows the heart or lungs of patients with a life-threatening disease or injury to function), the draft guidelines say.
The guidelines also say that in such circumstances, life-support systems are non-beneficial and increase avoidable burdens and suffering for patients and hence, are considered excessive and inappropriate.
Additionally, they increase emotional stress and economic hardship for the family and lead to moral distress in professional caregivers. Hence, the withdrawal of life-support treatments in such patients is regarded as a standard of ICU care worldwide, and has been upheld by several jurisdictions, the draft norms say.
The advisory further dubs such decisions as having “medical, ethical and legal considerations”.
“These guidelines are of vital importance because they specify how to and how not to care and treat those who are terminally ill,” critical care specialist and pulmonologist Dr Raj K Mani at Yashoda Super Speciality Hospital in Kaushambi, who headed the committee that drafted the guidelines, told ThePrint.
Dr Dhruva Chaudhry, senior intensivist (critical care doctor) with the Post Graduate Institute of Medical Sciences (PGIMS) Rohtak, who was also a member of the panel that framed the proposed norms, underlined that the “right to death” is equally important as the “right to life”.
“Many times, life support is offered or continued in patients even though it is completely futile. The proposed norms aim to help both clinicians and families to determine when they should draw the line,” Dr Chaudhry told ThePrint.
Journey of passive euthanasia in India so far
While hearing the historic Aruna Shanbaug case in 2011, the Supreme Court, in a landmark opinion, allowed passive euthanasia in India. The apex court said it was only possible under a stringent court procedure. Shanbaug, a nurse in Mumbai’s King Edward Memorial (KEM) hospital, was the centre of attention in the euthanasia case, after being in a vegetative state for more than three decades due to a sexual assault.
In her case though, as KEM hospital staff were recognised as Shanbaug’s next of kin and wished that she be allowed to live, journalist Pinki Virani’s petition to withdraw life support was declined by the apex court. Shanbaug died of pneumonia in 2015, after spending more than 41 years in a vegetative state.
In 2017, six years after the landmark 2011 decision by the Supreme Court on passive euthanasia, the apex court—in response to a petition by the Mumbai-based Indian Society of Critical Care Medicine—declared the right to privacy an independent fundamental right.
The following year, the court validated the legal permissibility of AMD and withdrawal or withholding of life-sustaining treatments.
Therefore, the recognition of passive euthanasia by the apex court implies that doctors can withhold or withdraw treatment for such patients, given that the caregivers follow due protocol.
Active euthanasia, which is the intentional act of killing a terminally ill patient on voluntary request, through direct intervention by the doctor—such as by injecting a lethal drug—is still illegal in India.
The 2018 judgment had laid down the withdrawal or withholding of life support under a three-level system of oversight—an internal medical board for a preliminary opinion, followed by the decision of a review board constituted by a district collector, and a final physical verification by a judicial magistrate.
However, since the complex and cumbersome process of passive euthanasia made families apprehensive of opting for it, the apex court, in January 2023, agreed to remove the clause that mandated permission by a judicial magistrate to forego life support.
In addition, a review board—which was to be originally headed by a district collector—was also done away with, and a chief medical officer was given the right to head the secondary board.
However, Dr Mani explained that while there is a whole spectrum of complexity that cannot be encompassed in the Supreme Court’s directive, some simple and straightforward withdrawal decisions may be made without following the entire process, provided that they are a collective choice of the family.
These decisions include withholding life support or resuscitation attempts.
In 2023, the Supreme Court also ruled that the ‘living will’ can now be signed by the executor in the presence of two attesting witnesses—preferably independent—and certified before a notary or gazetted officer, instead of a judicial magistrate.
What doctors say
Some senior functionaries of the Indian Medical Association (IMA)—the largest body of doctors in India—have expressed displeasure over the new draft guidelines.
For instance, Dr R.V. Asokan, president of the IMA, feels that the proposed draft guidelines put undue pressure on clinicians and may expose them to increased litigation by families of terminally ill patients.
“Also, we deem this an unnecessary exercise. What is done with dignity and trust by clinicians and the families together cannot become an area of regulation. It will create difficulties not only for the doctors but for the families as well,” Asokan told ThePrint.
However, Dr Mani stressed that the IMA may have missed the point completely and are contradicting the Supreme Court directives.
“There is no extra onus or pressure on doctors, it is an essential part of the duties of caregivers to guide families through difficult decision-making. As doctors, we need to be patient-centred, not self-centred,” Dr Mani said.
Dr Chaudhry also said that life support is extended on several occasions because for doctors, it may be technically right to do so, and sometimes, families are okay with it, depending on whether they can afford it.
“But like the Western countries, we need to adopt the nuanced way of letting go of the dignity of the patient—in cases where there is no chance of the patient reviving or having meaningful survival,” Dr Chaudhry added.
(Edited by Radifah Kabir)