Right to Advance Will and to forego life support: A Landmark judgement

Dr RK Mani, Group CEO, Nayati Group of Hospitals, Mathura, Agra and Amritsar

We must laud a truly Landmark judgment. The Supreme Court in a 5-Judge Constitutional bench delivered a judgment that is crucial to protecting patient’s rights towards the end of life: the right to Advance Will and the right to passive euthanasia. This judgment also decriminalizes well-meaning physicians and families who take decisions to withhold or withdraw life support in response to patient’s autonomous choice towards the end of life.

The petition was filed by an NGO Common Cause in 2005. I had impleaded in this case on behalf of the Indian Society of Critical Care Medicine (ISCCM). To me personally and to my colleagues in Intensive care, Palliative care and Neurology and many legal experts (as a part of an Advocacy group End of Life care India Task force (ELICIT)), it was a moment of vindication of our campaign to restore and respect our individual freedoms. The Supreme Court has recently delivered two progressive judgments that would go a long way in humanizing healthcare: the Privacy judgment last year and this one on Advance Will and Passive euthanasia.

Why is it so important?

In a doctor-patient relationship autonomy and Beneficence are crucial. Autonomy is to have control over what is done to your body even if you should lose mental capacity either through an instrument such as Advance Will or through surrogates. Beneficence is the obligation of the physician to act to the benefit and “best interests” of the patient always. Going against patient’s informed wishes would violate this principle. Professional ethics makes it mandatory that we respect patient’s choice to forego life support when it is likely to benefit only a little but potentially could do great harm. The CJI and his colleagues observed that the principle to forego prolongation of life in the context of terminal illness is consistent with religion and philosophy. He also observed medical decisions must also integrate socio cultural and economic considerations. For the first time we hear from the SC these fundamental principles that have been subjects of much debate and deliberations all over the world. End of life issues have been a part of mainstream medical research for the last three decades. 

The ISCCM formulated ethical position statements in 2005, 2012 and together with the Indian Association of Palliative Care (IAP) in 2014, based on these principles and evidence basis in world literature. It had outlined the practical steps by the bedside focusing on alleviation of pain, dyspnoea and distress. The principles embodied in the position statements stand endorsed by the present legal pronouncements. The terminology employed by the SC remains somewhat outdated in relation to contemporary medical usage. Recently under the aegis of the ICMR a document called “Definition of terms used in limitation of treatment and providing palliative care at end of life “ is ready to be released this month. This would go a long way in standardizing the terms used to facilitate communication and formulation of precise rules.

The work towards compassionate care of the dying is unfinished. The court has removed the requirement for a Court procedure for “Passive euthanasia” decisions mandated in the Aruna Shanbaug case. This is removal of what appeared to be an insurmountable road block. The CJI during court proceedings had observed that neither the family nor the physician looking after a terminally ill patient would have the time to approach the High Court!

The details may carry the devil unless the medical profession fully participates in its formulation. There should be adequate safeguards which should be pragmatic and not obstructive of decisions to forego life support. This is because as an intensivist I know these are every day decisions that would serve to avoid an immense load of medical technology imposed suffering.

The fear of the Law that has kept many of us from making ethical decisions will now be lifted. Such decisions will go a long way in bridging the trust deficit between doctors and patients. There is nothing more healing than a dose of humane care.