FICCI-ELICIT guide to improving end-of-life care & decision-making

Advance Medical Directives (AMD) are now legal in India following the landmark judgment of the Supreme Court of India in the matter of “Common Cause versus Union of India, 2018 (5) SCC 1”. The treating doctor who in good faith abides by an advance directive will not be held liable under criminal law.

The Federation of Indian Chamber of Commerce and Industry (FICCI) and End of Life Care in India Taskforce (ELICIT) have come together to release an information guide to improve and facilitate execution of end-of-life decisions for doctors and hospital administrators.

ELICIT is a joint initiative of the Indian Academy of Neurology, Indian Society of Critical Care Medicine (ISCCM) and Indian Association of Palliative Care (IAPC) formed in 2015.

Here are excerpts from the “Action Plan for end-of-life care and decision-making”.

  • “Respect a competent patients decision:When the patient who is competent refuses treatment this should be honored. Respecting the patients decision is required by the law. This decision should be respected even if the patients family members express a different opinion regarding Foregoing of Life Support (FLS).
  • Opt for shared decision making, if overriding an AMD is in the patients best interest:If the patient is incompetent but has a valid AMD, this must be honored as far as possible. If there are valid grounds to override the same in the best interests of the patient, a consensus through shared-decision making should be arrived at, between caregivers and surrogates, which should be duly documented.
  • Base the decision on wishes of the patient as well as the prognosis, when no AMD is available:If there is no AMD available, decisions between care givers and surrogates must be based on the values and wishes of the patient as known to the family as well as the prognosis and best interests of the patient as judged by the treating doctors. Only under exceptional circumstances, such as when a person is in a persistent vegetative state, can the Court-recommended procedure be implemented. For example, in a case of terminal cancer with imminent death, decision not to put the patient on a ventilator needs to be taken within hours or few days. In the common scenario, the FLS decisions must be based on refusal of consent for either initiation or continuation of life sustaining treatment in such cases. All decisions must also be duly documented to ensure transparency.
  • Certify and document Brain Death in accordance to the Transplantation of Human Organs and Tissues Act, 1994:Brain death should be certified and documented in the manner laid down in the Transplantation of Human Organs and Tissues Act, 1994 irrespective of whether there is consent for organ donation or not. This is in conformity with internationally accepted definitions of death. This position in Law was further reiterated in the Aruna Shanbaug judgement. When brain death has been so certified, the patient can be disconnected from life support unilaterally after informing and counselling the family.”

The Transplantation of Human Organs and Tissues Act, 1994 has defined a “deceased person” as a person in whom permanent disappearance of all evidence of life occurs, by reason of brain-stem death or in a cardiopulmonary sense, at any time after live birth has taken place

(Source: FICCI-ELICIT information guide to facilitate execution of end-of-life decisions – for Doctors and Hospital Administrators)

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