New Delhi: The AIIMS-Delhi is planning to start a weekly OPD to spread awareness among patients on how they would like to be medically treated or not treated should they lose the decision-making capacity due to an accident or disease. The proposed move comes in the backdrop of the Union health ministry issuing draft “Guidelines for Withdrawal of Life Support in Terminally Ill Patients“.
Dr Sushma Bhatnagar, the chief of Dr B R Ambedkar Institute Rotary Cancer Hospital at AIIMS, said that the weekly OPD would be started by the cancer institute to extend counseling to registered patients about the Advance Medical Directives (AMD) and get the legal document made.
Advance Medical Directives (AMD) is a written declaration made by a person with decision-making capacity documenting how they would like to be medically treated or not treated should they lose capacity.
“Terminally ill patients or those who suffer fatal accidents and are not salvageable are put on life support and keep on getting treated unnecessarily. The idea is that one can make such AMDs when they are still in sound mind and decide on how they want to be treated or not treated should they lose the decision-making capacity later,” Dr Bhatnagar said.
The fundamental principle of Palliative care is not to prolong suffering by putting someone on life support unnecessarily but ease their pain by taking proper care of the symptoms, Dr Bhatnagar explained.
“The idea is not to hasten death or desert them. Putting such patients in the ICU or on life support makes them cut off from the entire family,” Dr Bhatnagar said.
“People talk about health literacy but death literacy among the masses is equally important,” she said, underlining promoting AMDs is not because of any pressure on resources and medical infrastructure, but to take the medical treatment in the right direction.
In 2018, the Supreme Court for the first time stated explicitly that ADMs are legally valid documents and laid down guidelines on how it should be implemented, advocate Dhvani Mehta said.
In 2018, to execute an ADM one had to go to a judicial magistrate but now one can do it before a notary or a gazetted officer.
“The first principle of medical ethics is autonomy in how the patients want to be treated when they fall sick. When I am a person of sane mind and can exercise decision-making capacity I tell the doctor I don’t want this treatment and they are bound to respect it.
“The idea behind an AMD is why should that same autonomy not exist when you have lost your decision-making capacity. There will be situations arising out of dementia, stroke or accident when one may lose their decision making capacity but if they had made the AMD in a sane informed decision stating clearly that they do not wish to be put on life support then accordingly doctors and family members would take a decision,” Mehta said.
Since the Supreme Court order in 2018, there has been a noticeable increase in the number of people getting their AMDs made, Dr Bhatnagar said.
The draft “Guidelines for Withdrawal of Life Support in Terminally Ill Patients”, also state that doctors should take a considered decision to not start a life supporting measure in a terminally-ill patient, that is unlikely to benefit the patient and is likely to harm in terms of suffering and loss of dignity.
The draft document states that many patients in the ICU are terminally ill, and not expected to benefit from life sustaining treatments (LST).
“In such circumstances, LST are non-beneficial and increase avoidable burdens and suffering to patients and therefore, are considered excessive and inappropriate. Additionally, they increase emotional stress and economic hardship to the family and moral distress to professional caregivers,” the draft said.
