Purpose:The purpose was to develop an end-of-life care (EOLC) policy for patients who are dying with an advanced life limiting illness and to develop practical procedural guidelines for limiting inappropriate therapeutic medical interventions and improve the quality of care of the dying within an ethical framework and through a professional and family/patient consensus process.Evidence:The Indian Society of Critical Care Medicine (ISCCM) published its first guidelines on EOLC in 2005 [1] which was later revised in 2012.[2] Since these publications, there has been an exponential increase in empirical information and discussion on the subject. The literature reviewed observational studies, surveys, randomized controlled studies, as well as guidelines and recommendations, for education and quality improvement published across the world. The search terms were: EOLC; do not resuscitate directives; withdrawal and withholding; intensive care; terminal care; medical futility; ethical issues; palliative care; EOLC in India; cultural variations. Indian Association of Palliative Care (IAPC) also recently published its consensus position statement on EOLC policy for the dying.[3]Method:An expert committee of members of the ISCCM and IAPC was formed to make a joint EOLC policy for the dying patients. Proposals from the chair were discussed, debated, and recommendations were formulated through a consensus process. The members extensively reviewed national and international established ethical principles and current procedural practices. This joint EOLC policy has incorporated the sociocultural, ethical, and legal perspectives, while taking into account the needs and situation unique to India.

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EXECUTIVE SUMMARYPurpose:To develop an End of Life Care (EOLC) Policy for patients who are dying with an advanced life limiting illness. To improve the quality of care of the dying by limiting unnecessary therapeutic medical interventions, providing access to trained palliative care providers, ensuring availability of essential medications for pain and symptom control and improving awareness of EOLC issues through education initiatives.Evidence:A review of Country reports, observational studies and key surveys demonstrates that EOLC in India is delivered ineffectively, with a majority of the Indian population dying with no access to palliative care at end of life and essential medications for pain and symptom control. Limited awareness of EOLC among public and health care providers, lack of EOLC education, absent EOLC policy and ambiguous legal standpoint are some of the major barriers in effective EOLC delivery.Recommendations:Access to receive good palliative and EOLC is a human right. All patients are entitled to a dignified death. Government of India (GOI) to take urgent steps towards a legislation supporting good EOLC, and all hospitals and health care institutions to have a working EOLC policyProviding a comprehensive care process that minimizes physical and non physical symptoms in the end of life phase and ensuring access to essential medications for pain and symptom controlPalliative care and EOLC to be part of all hospital and community/home based programsStandards of palliative and EOLC as established by appropriate authorities and Indian Association of Palliative Care (IAPC) met and standards accredited and monitored by national and international accreditation bodiesAll health care providers with direct patient contact are urged to undergo EOLC certification, and EOLC training should be incorporated into the curriculum of health care education.

Background:Indian hospitals, in general, lack policies on the limitation of inappropriate life-sustaining interventions at the end of life. To facilitate discussion, preparation of guidelines and framing of laws, terminologies relating to the treatment limitation, and providing palliative care at the end-of-life care (EOLC) need to be defined and brought up to date.Methodology:This consensus document on terminologies and definitions of terminologies was prepared under the aegis of the Indian Council of Medical Research. The consensus statement was created using Nominal Group and Delphi Method.Results:Twenty-five definitions related to the limitations of treatment and providing palliative care at the end of life were created by reviewing existing international documents and suitably modifying it to the Indian sociocultural context by achieving national consensus. Twenty-five terminologies defined within the scope of this document are (1) terminal illness, (2) actively dying, (3) life-sustaining treatment, (4) potentially inappropriate treatment, (5) cardiopulmonary resuscitation (CPR), (6) do not attempt CPR, (7) withholding life-sustaining treatment, (8) withdrawing life-sustaining treatment, (9) euthanasia (10) active shortening of the dying process, (11) physician-assisted suicide, (12) palliative care, (13) EOLC, (14) palliative sedation, (15) double effect, (16) death, (17) best interests, (18) health-care decision-making capacity, (19) shared decision-making, (20) advance directives, (21) surrogates, (22) autonomy, (23) beneficence, (24) nonmaleficence, and (25) justice.

Indian Palliative Care has developed over the past 17 years but it has also developed disabilities due to lack of a National Policy and hence has compromised its effectiveness. It is true that we have come a long way but we still have many miles to go and we will get there only if we have a proper road map and sign posts. This article attempts to suggest some specific measures in establishing such a National Policy