Let’s sit for a second with the thought of death. What is the first emotion it invokes in you? Fear? Serenity? Panic? Loss of control? Maybe all of these things. We have socially trained ourselves to fear death and imagine it happening only to strangers. Preparation towards death is often limited to insurance policies – but never for the act of dying itself. Our conception of death remains too close to emotional distress and suffering. Even if we do not want invasive medical treatment at the end of our lives, it feels difficult to imagine a setting different from hospital machines and limited visits by our loved ones.
Palliative care directly addresses this gap. It is a healthcare specialisation that helps people prepare for death and ensures they die with dignity, shifting the focus from merely prolonging life to improving its quality for patients with life-limiting illnesses.
Without accessible palliative care, people face undignified, painful deaths and often undergo unwanted treatments. This systematic failure becomes evident when one looks at the status of access to palliative care in India,
India has made significant strides to uphold the right to die with dignity legally and has laid down guidelines on the withholding and withdrawing of life-sustaining treatment. The Honourable Supreme Court clarified that palliative care should be accessible to all persons, even when they refuse life support. However, despite a ready framework, India is largely unprepared to deal with death.
Lack of access to palliative care is almost certain to cause agony and inflict indignity on a person. One feels forced to undergo invasive end-of-life treatments or leave a hospital where their desired care is not provided. This is a systematic failure of a structure that does not provide palliative care at the institutional level. Research finds that only four per cent of the people who require palliative care actually receive it. The World Health Organisation also recognises palliative care as an ethical responsibility as part of the Sustainable Development Goal of universal health coverage.
Actioning a right requires a transformational change at multiple levels, including legal structures, institutions, social actors, individuals, and society. This blog seeks to present the need for institutionalising palliative care.
Advance Care Planning & Palliative Care: Two sides of the same coin
To integrate palliative care into standard medical practice, India must focus on Advance Care Planning. This process empowers individuals to discuss their goals of care, document their healthcare preferences, and designate a healthcare representative who can make decisions on their behalf in case they lose decision-making capacity.
These wishes can be made known through specific documentation procedures, which have been upheld by the Supreme Court of India – Advance Medical Directives (AMDs) and Do-Not-Attempt-Resuscitation Orders (DNAR). These documents inform other individuals and medical professional about a person’s wishes for future healthcare and ensure that their wishes are respected even when they are unable to speak for themselves.
While the documentation of care choices can ensure that invasive treatment is not provided, palliative care goes beyond simply respecting this choice and ensures dignity and comfort care. The awareness regarding the right to die with dignity and the right to make advance medical directives remains poor and marred by hesitation.
Resuscitating End-of-Life Care
Palliative care encompasses not only physical care but also looks at psychological, social, spiritual, and emotional support. It is critical to remember that palliative care is not limited to those with life-limiting illnesses – it is an option for anyone who has received a terminal diagnosis, at any stage of their life. In India, hospitalisation is one of the key reasons to push persons below the poverty line. The heavy medicalisation and dependence on technology to provide care often make the person invisible, and often at the behest of their hope in chances of recovery via a miracle. Access to this care reduces unnecessary hospital admissions and improves the quality of life of an individual.
The legal and policy landscape provides some hope. Governments at the central and state levels have released policies, including the National Program for Palliative Care (NPPC) and other state-level palliative care initiatives. The Supreme Court has underlined the importance of palliative care, recognised the right to die with dignity as a fundamental right, and laid down guidelines for the process of withholding and withdrawal of life-sustaining treatment. However, the reality does not match the rights guaranteed on paper. Poor death literacy, misconceptions, and general hesitation to discuss death often hinder access to necessary care. A recent study surveying 43,000 people from an urban settlement in Delhi finds that none of the people had heard about palliative care, even though the nearest health centre was only a kilometre away. Only three states have actively implemented the Supreme Court’s guidelines, and few hospitals nationwide actively support their palliative care units.
Ensuring palliative care is accessible to all, especially by the governments and hospitals, requires concerted efforts at the institutional level: In terms of policymaking, the operational guidelines of the National Program for Palliative Care must be updated to include end-of-life and palliative care as necessary forms of care, in line with the Supreme Court’s judgment on the issue. At the hospital level, especially in tertiary hospitals comprehensive end-of-life care policies should be developed. These policies should detail the responsibilities of healthcare professionals in such cases. There should also be protocols for a smooth transition of critical care patients into palliative care units or the integration of palliative care professionals into the critical care team as part of the standard medical practice. The promotion of palliative care and counselling of patients and their caregivers within hospitals should be encouraged.
Palliative care and advance care planning are two sides of the same coin, and to achieve dignity in care, India must provide a pathway for both to function effectively on the ground. A critical part of advance care planning is end-of-life care and the withholding/withdrawal of life-sustaining treatment. The Supreme Court has laid down the guidelines for the process, and states must act to operationalise these at the earliest.
- Appointment to Medical Boards: States must instruct Chief Medical Officers to either nominate doctors on a need basis or empanel multiple doctors who are on a common roster. These doctors would be part of the Secondary Medical Board and would certify if it is in the best interests of the patient to forego life-sustaining treatment.
- Custodians to store AMDs: Local governments should appoint and equip persons from panchayats, municipal corporations, or municipalities to store advance medical directives and liaise with hospitals when required.
- Intimation to JMFCs: Once the Medical Boards approve the decision for withholding or withdrawing, the hospital is required to inform the Judicial Magistrate of First Class. This communication can be facilitated by High Courts using designated email addresses for such cases.
- Inform notaries/gazetted officers: The Central and state governments should additionally inform available notaries and gazetted officers about their role to attest advance medical directives
The orders must be made widely available to ensure the information is accessible to the public.
Governments must no longer hesitate to play a critical role in establishing well-planned and responsive protocols, thereby bolstering state capacity to ensure access to healthcare. Delays will erode patient autonomy and dignity, adding to the deluge of sensitive and traumatic medical decisions that patients must make. Healthcare is dependent on ‘caring’ and ‘not curing’ – and it is time that we remind ourselves of the fundamental goals of care.
Disclaimer: The views expressed in this blog do not necessarily align with the views of the Vidhi Centre for Legal Policy.
About the Authors
Shireen currently works as a Research Fellow, Founder's Office. Shireen holds a Master's degree in Sociology from Delhi School of Economics, and a BA(H) Sociology from University of Delhi. Prior to joining Vidhi, she worked with the Office of Dr. Virander Singh Chauhan, where she led research, communications, and advocacy on public health issues, particularly mental health & suicide prevention, glaucoma, and tuberculosis. She has an extensive experience working on areas of gender rights, public health, environment, and looking at how intersectional identities impact social issues.
Rituparna is a Research Fellow at Vidhi and works in the area of health. Her interests include public health, data protection and privacy, and mental health. Prior to joining Vidhi, she was engaged as a Policy Research Associate under Mr. Kashish Aneja, a practicing advocate & consultant with the O’Neill Institute for National and Global Health Law, Washington D.C., where she worked extensively on topics including One Health, global regulation of e-cigarettes, and misleading advertisements related to high fat, sugar and sodium (HFSS) foods and beverages. Rituparna graduated from the National Law University Odisha (NLUO) in 2022 with a B.A., LL.B. (Hons.), and received a Merit Gold Medal in the subject of Personal Law.