New ruling on care of dying will force some to live life “of machine-related suffering”

The newly revised ruling on advance medical directives and withholding/withdrawing medical support for the dying in India will inevitably force some terminally ill patients to “live a life of machine-related suffering” and deprive them of their autonomy and dignity in death, suggest specialist doctors in a letter published online in the journal BMJ Supportive & Palliative Care.

While a progressive step, the 2023 ruling still has important shortcomings, they add.

In the absence of any specific legislation for the care of the dying, the right to dignified end of life care is interpreted through the Constitution of India Article 21 and Article 14, they write.

In 2018 the Supreme Court of India ruled on advance medical directives and the withholding/ withdrawal of life support in terminally ill patients. This was revised in 2023, with the aim of clarifying and simplifying several aspects of end of life care in the country.

But, say the authors, it has some major shortcomings, the first of which is the continued reference to withholding or withdrawing life support as ‘passive euthanasia’.

The use of this phrase “is likely to cause an enormous burden of guilt on families and professionals,” because of its connotations with killing, however noble the objective. “It would also invite religious objections,” they suggest.

Secondly, while the ruling simplifies the creation of an advance directive, it will be meaningless unless this change becomes widely known, say the authors.

“It is imperative to create awareness among the lay public so that people know how to create such a document and so that the notary public and gazetted officers are aware of these guidelines.”

More importantly, although less complex than the 2018 version, the new ruling on the procedure for withdrawing life support laid down by the 2023 judgement, “continues to be impractical,” insist the authors.

“For a terminally ill person on artificial life support systems, every minute of existence can be agony,” they explain, emphasising that there is no timeline required for the second of the two authorising committees to make a decision.

“While we understand the importance of caution and safeguards, such cumbersome procedures will lead to avoidance of withholding or withdrawing artificial life support in the context of futility of treatment, or at best referral to higher centres under such circumstances adding to the anguish of patients and caregivers,” they write.

Another important omission is the failure of the new ruling “to consider the existing injustice in access to healthcare and in the overall organisation of the healthcare system in India,” in the absence of universal health coverage, explain the authors.

“As a result, the ruling only meets the needs, if at all, of a small portion of the population,” they add.

And lastly, the procedure for revoking an advanced directive, should preferences change, remains cumbersome, they argue.

They conclude: “In the 21st century due to advancement in the field of medical science, it is possible for a human to stay alive with the help of machines for extended periods of time. In these circumstances, it is important to give the individual a right to refuse treatment.

“It is important to understand that by refusing treatment, a patient is not attempting suicide, but is merely following the natural course of nature that would have existed had such advances not occurred.

“It is important to remember that while drugs and devices prolong life, they can significantly reduce quality of life. Therefore, a person must have the right to refuse treatment and the choice to live with the quality of life of their choice and should not be forced to live a life of machine-related suffering.”