AIIMS’ draft end-of-life policy gives terminally-ill patients, family, option to end treatment
The draft “End of Life Care” policy developed by a team of experts at the All India Institute of Medical Sciences (AIIMS) gives terminal patients and their family members the option of stopping or withholding life-sustaining care, including ventilator support.
The policy, a copy of which has been seen by Hindustan Times, is aimed at providing the option of a dignified death to patients in cases where treatment will not extend their life or its quality. However, it is still a draft and will be implemented across departments after a public consultation.
AIIMS is the first hospital in the country developing such guidelines.
The guidelines were finalised by a 15-member committee, including doctors from critical departments such as cardiology, nephrology, and emergency medicines, lawyers, and experts on medical ethics. It has been vetted by a legal committee of two lawyers.
“Several rounds of internal consultations have already happened and we are trying to implement the policy as soon as possible after a public consultation. This policy is the need of the hour as India is one of the worst places when it comes to dying with dignity. Several people for whom further treatment is futile are still hooked on to tubes and ventilators instead of being home with their families,” said Dr Sushma Bhatnagar, head of the department of onco-anaesthesia and palliative care at AIIMS, who is spearheading the initiative.
In various intensive care units of the hospital, around 10% patients are put on advanced life support despite there being no chance of them benefiting from the treatment, doctors say. The guidelines allow for withholding or withdrawal of care in patients with poor prognosis -- those who are severely dependent on life support, are very old, have multiple co-morbidities, have multiple organ failure, worsening vital signs, are likely to have poor neurological outcome after a cardiac arrest, and also those who are brain dead.
The treating doctor has to decide whether further treatment in a patient is futile, with two other consultants from the same department not directly involved in the treatment of the patient seconding this. “This will help other institutions to come up with their own policies and maybe, gradually, a national policy for end of life care, which then one can be used to take things forward legally. This document will also give support to other doctors on how it can be done within the limits of the law. People currently are not sure what can be and cannot be done,” said Dr Randeep Guleria, director, AIIMS.
Once the doctors are in consensus, the patient (if conscious) or the family members have to be informed. Communication should include explanation on the terminal nature of illness, short life expectancy, burden versus benefit of aggressive further management, and symptoms expected in last few days or hours and their comfort measuring strategies.
“If the patient is competent, the decision must be taken as per their wishes. But by the time they reach this stage, they may have lost the capacity to exercise the judgement. The consequence shouldn’t be that the patient be hooked onto the machine,” said Dhvani Mehta, senior fellow at the Vidhi Centre for Legal Policy. She was one of the lawyers in the drafting committee.
It will also be mandatory to make a palliative care referral for such patients. “Even if treatment is futile, we will not abandon the patients. The aim is to ensure that the patient remains comfortable and pain-free till the end. Even though the guidelines haven’t come to force yet, the palliative care department has already started receiving referrals for several terminal patients,” said Dr Bhatnagar.
If the patients and their family do not agree to withdrawing or witholding life-support care, doctors can suggest that the patient be taken to another hospital.
“Of course, the treatments will only with withheld or withdrawn if the patient or the family members agree. Transferring to another facility is just an option that can be presented. The doctors will continue the treatment if the families do not agree,” said Dr Bhatnagar. In case of any dispute, the case can be referred to institutional “End of Life Care” review committee.
The AIIMS guidelines go a step ahead of the “Do not attempt Resuscitation” guidelines developed by India’s apex medical research body, the Indian Council of Medical Research (ICMR), which allows physicians to not attempt cardio-pulmonary resuscitation (CPR) in patients with incurable diseases. It, however, does not allow the withholding or withdrawal of active care.
The current guidelines laid down for withdrawal of care in terminal patients is impractical, says Mehta, referring to those prescribed by the Supreme Court (SC) on passive euthanasia in March 2018.
“The SC guidelines are not practically implementable -- a hospital board has to first decide whether care should be withdrawn, refer it to an external board set up by the collector, and then a judicial magistrate has to come to the hospital to see if everything is in order. Decisions such as this have to be made within a few hours or days. This process will take months,” said Mehta.
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