End-of-life care in India: A care paradigm whose time has come

Intensive care was introduced in the 1950s with the advent of mechanical ventilatory support and cardiopulmonary resuscitation. Initially, the medical world was caught up in the romance of new possibilities for rescue and survival in disease conditions that appeared beyond salvage. It then emerged in collective consciousness that deaths in the intensive care unit (ICU) that occurred in a substantial number took place in ways not aligned with human dignity. While a good death is conceived as one that takes place amidst loved ones without avoidable burdens, in reality, it has become the norm to experience physical, emotional and economic pain associated with advanced life support. Since the early 1990s, there has been a global movement away from this default trajectory for dying patients in the ICU. Based on the four well-known tenets of ethics, 70%–90% of the dying in European and North American ICUs undergo compassionate care towards death, shifting the care away from life support towards palliative care.[1,2] Palliative care of the dying includes efficacious symptom control for patients and emotional support for the family, and enables shared decision-making. Legislation around the world enables appropriate treatment withdrawal to be legally accepted, resulting in increased ease and frequency of withdrawal of life support (WLST) over the decades.[3] This change in critical care practice was slow to catch on in India, in contrast to technological innovations, where the gap has been narrowing. Until the turn of the millennium, the ethical basis of care for the dying was largely unknown to professionals and the public. INITIAL EFFORTS TOWARDS END OF LIFE CARE In 2005, cognisant of this lacuna, the Indian Society of Critical Care Medicine (ISCCM) published the first ethical position statement on End-of-life care (EOLC) for Indian ICUs.[4] It proposed thoughtful prognostication, effective communication of palliative care options and shared decision-making with next of kin as the essential steps towards WLST. There was a virtual absence of a legal framework for the WLST because most physicians were wary of making appropriate treatment limitation decisions. The ISCCM approached the Law Commission of India to prepare a document providing a legal framework for WLST. In 2006, the commission published the 196th draft bill on ‘treatment of the terminally ill patients (for the support of patients and physicians)’.[5] The bill, in its opening lines, separated WLST from active euthanasia, suicide and abetting suicide. It went on to endorse the WLST as legal under certain defined conditions. It emphasised the patient’s right to autonomy and the physician’s duties of beneficence and non-maleficence as essential elements of practice. It expressly discouraged Advance Will to be allowed, as in its view it was subject to ‘misuse’. EVOLUTION OF THE LAW AND PROFESSIONAL GUIDELINES The Aruna Shanbaug case in 2011 was the first case law on WLST.[6] It allowed, in principle, ‘passive euthanasia (WLST)’ for a patient who was in a persistent vegetative state (PVS) for nearly four decades. The decision was consented to by the next of kin, and a process involving the High Court was initiated. Notably, the judgement addressed only a specific case of PVS and did not address the more common everyday instances of WLST in the ICU. Due to a court process, this provision was not utilised until the Harish Rana case in 2024.[7] The parents had requested the removal of Harish’s feeding tube from the PVS for 12 years, a decision yet to be made by the Supreme Court. The ISCCM published its second iteration of the EOLC guidelines in 2012.[8] Recognising the impracticality of taking to court everyday WLST decisions, the guidelines advocated following the spirit of the law and taking deliberate, collective and well-documented decisions in ICU practice. In 2014, the ISCCM and the Indian Association of Palliative Care (IAPC) published a collaborative EOLC and palliative care statement formulating a 14-step decision-making pathway.[9] It combined essentially the principles laid out in the 2005 ISCCM guidelines and added the practical details of palliative care for dying patients. The real breakthrough in law came in 2018 with the Supreme Court judgement Common Cause vs UoI.[10] For the first time, the SC ruled that by virtue of the fundamental right to autonomy and privacy enshrined in Article 21 for the right to life, every patient had the right to refuse any medical treatment, whether to their detriment. It also recognised the legal validity of a duly executed advanced medical directive (AMD) to serve as an expression of the patient’s wishes should they lose decision-making capacity when terminally ill. It laid down the process for WLST decisions, whether with a valid AMD or (as is usually the case) without. It prescribed a 3-tier process that involved a hospital medical board, a board set up by the district collector, and final approval by the judicial magistrate of the first class. The procedure was quite understandably too onerous for anyone to follow. To simplify the above process in the real world, the ISCCM, represented by the Vidhi Centre for Legal Policy and senior advocate Mr Arvind Datar, appealed to the SC. In January 2023, the Supreme Court issued a judgement simplifying the process for executing AMD and WLST decisions.[11] For AMD validation, two witnesses and certification by a notary or a gazetted officer would suffice. For WLST, two medical boards are required. The treating team forms the primary board, composed of at least three physicians with at least 5 years of standing. A secondary medical board is needed to approve the decision arrived at by the primary board and the family/legally appointed proxy. It consists of three other physicians with at least 5 years of standing, one of whom should be an appointee of the district healthcare officer (e.g. the CMO). There is nothing in the judgement of having a standing secondary board with all physicians, including the DHO appointee from the same hospital. The procedure is the same for both government and private institutions. CLINICAL CHALLENGES AND PRACTICE Over time, the Indian Intensivist has come to realise the importance of ethical decision-making in terminal illness. As outlined in the latest ISCCM-IAPC guidelines published in March 2024,[12] EOLC decision-making must integrate clinical expertise, ethical principles and the legal framework, which laid out a ten-step pathway for EOLC decision-making. The crucial first step is thorough evaluation and thoughtful prognostic assessment. First, there must be a consensus within the treating team regarding the optimal goals of care. Communication is the most crucial intervention in decision-making. In the ICU, a multidisciplinary family meeting within the first 48–72 h is the global standard.[13] The prognosis is conveyed to the family with sensitivity and transparency. The goals of care are set through repeated meetings. The pros and cons of the proposed options are openly and clearly discussed. Given the scenario of terminal or futile care, the option of palliative care only is explicitly conveyed. If death is foreseeable, it should be mentioned sensitively to the family. Communication skills include active listening, allowing the family to express emotions and supporting them through the process of acceptance. The WLST options are discussed once the prognosis is understood. They are conveyed only as options, taking care not to impose the physician’s values on the family. It should be made clear that the focus is on honouring the patient’s choices and making decisions in their best interests. Although financial stress may push families to opt for WLST, the treating team must ensure that these decisions are made on sound clinical and ethical principles and not on financial constraints. A WLST decision is a shared decision between the family and the treating team. Where a consensus is not reached, such decisions are postponed, pending further communication and opportunity for mutual understanding. IMPLEMENTING THE SC JUDGEMENT The Ministry of Health and FW has uploaded a draft of the Guidelines for Life Support Withdrawal in August 2024.[14] The guidelines are a synopsis of the ISCCM-IAPC Statement of March 2024. There is a gap in the dissemination of SC judgements to state health ministries, district courts and health officers. Initiatives have been taken in several states, notably Karnataka, Maharashtra, Goa and Haryana; however, the systems for appointing custodians of AMD and physicians by the CMO for the secondary board are yet to be in place. Meanwhile, on the ground, hospitals can have a standing panel from which secondary boards can be available. The Karnataka Government rules state that members of the brain death committee may function as district health officer appointees.[14] The spirit of the law is having a panel of doctors participating in the decision, which is verified by a second panel of physicians other than the treating team. CONCLUSION The awareness of appropriate treatment limitations and timely shift to effective palliative care for terminal illness in Indian ICUs is increasing amongst both physicians and the public. There are evidence-based professional guidelines that are supported by landmark Supreme Court judgements. Although the systems for smooth implementation are still in progress, there has been a definitive shift in the paradigm for humane and holistic care of dying patients in the ICU.