Recently, the Ministry of Health and Family Welfare has released draft Guidelines for the Withdrawal of Life Support in Terminally Ill Patients. These guidelines aim to operationalise the Supreme Court’s 2018 and 2023 orders on the right to die with dignity for all Indians. These draft guidelines, and the Supreme Court’s judgment, provide a clear legal defined framework for withholding/ withdrawing life-sustaining treatment in India.
What is meant by withholding/ withdrawing life-sustaining treatment? How is it followed in India?
Withholding or withdrawing life-sustaining treatment- It refers to discontinuing life-sustaining medical interventions such as ventilators and feeding tubes etc., when these no longer help the condition of the patient or prolong their suffering.
Process of Withholding life support treatment- The withholding or withdrawal of life-sustaining treatment can take place either through
a. Informed Refusal- Informed refusal by a patient with decision-making capacity
b. Advance medical directive or a ‘living will’- It is a document that specifies what actions should be taken if the person is unable to make their own medical decisions in the future.
c. Determination by the treating Physician in case of absence of living will- The treating physician can determine the withdrawal of life support in case of absence of living will, in the following cases-
No reasonable medical probability of recovery from a terminal or end-stage condition, or vegetative state
Any further medical intervention or course of treatment would only artificially prolong the process of dying.
Withholding/ Withdrawing life-sustaining treatment is Palliative Care, Not Abandonment
a. Withholding or withdrawing life-sustaining treatment is not a withdrawal of care but a shift to palliative support, which is aimed at minimizing pain and enhancing comfort.
What has been the history of evolution of Right to die in India?
The right to refuse medical treatment has always existed in common law, even if it results in death. Following the Supreme Court’s decision in Common Cause vs Union of India (2018), the right to refuse medical treatment has also been recognised as a fundamental right under Article 21 (Right to life and personal liberty) of the Indian Constitution.
| Aruna Shaunbagh vs Union of India, 2011 | SC recognised that the life-sustaining treatment could legally be withheld/withdrawn even from persons without decision-making capacity. |
| Common Cause vs Union of India, 2018 | SC recognised the right to die with dignity as a fundamental right under Article 21 of the constitution, and legalised the use of advance medical directives or ‘living wills‘. |
| Common Cause vs Union of India, 2023 | SC simplified the process for making living wills and withholding/withdrawing life-sustaining treatment by removing bureaucratic hurdles. |
What are the latest guidelines of the Ministry of Health and Family Welfare for the Withdrawal of Life Support?
| Establishment of Medical Boards and their recommendation | 1. Hospitals have to establish Primary and Secondary Medical Boards to evaluate if continued treatment is beneficial for a terminally ill patient. 2. Primary Board- It will comprise the treating doctor and two subject-matter experts with at least five years of experience. It will assess the patient’s condition, and will recommend the appropriateness of withholding/ withdrawing life-sustaining treatment. 3. Secondary Board- It will comprise a registered medical practitioner nominated by the district Chief Medical Officer, along with two subject-matter experts with at least five years of experience. All these members must be different from those on the Primary Medical Board. It will review the decision of the Primary Medical Board. |
| Consent by the Nominated Persons | The persons nominated by the patient in the advance medical directive or the surrogate decision-makers (where there is no directive) must consent to the withholding or withdrawal of treatment. |
| Notification of the decision to Judicial Magistrate | The hospital must notify decisions on withholding/ withdrawing life-sustaining treatment to the local judicial magistrate. |
What is the significance of the Guidelines for withdrawal of life support?
1. Affirms the Right to Die with Dignity- The recent draft guidelines operationalises the Supreme Court’s 2018 and 2023 rulings in the Common Cause of India case, solidifying the legal right of terminally ill patients to die with dignity.
2. Structured Mechanisms for Decision-Making- The guidelines call for the creation of Primary and Secondary Medical Boards in hospitals. These layers of oversight ensure that the decision to withdraw life support is thoroughly examined.
3. Procedure for Life Support Withdrawal- The guidelines define a clear procedure- the Primary Board assesses the patient’s condition, and the Secondary Board reviews it independently. Consent from patient-designated surrogates or family members is required, and the hospital must notify a judicial magistrate of the decision. This process provides checks, transparency, and accountability.
4. Ethical Shared Decision-Making- The guidelines emphasize shared decision-making between doctors and the patient’s family. This ensures that medical care aligns with the patient’s wishes and provides legal clarity. This approach respects patient autonomy, protects medical professionals, and reduces family burden.
What are the challenges with the New Guidelines for Withdrawal of Life Support, which reinforce the right to die?
1. Complexity in Medical Board Setup- Establishment of Primary and Secondary Medical Boards for every hospital can be resource-intensive, particularly for smaller hospital facilities.
2. Lack of Dedicated Legislation- The absence of a specific law on the issue of Right to die could lead to inconsistent application and legal uncertainty. This might discourage hospitals from implementing the guidelines fully.
3. Misunderstanding of Treatment Withdrawal- The term “passive euthanasia” is still commonly used, leading to confusion and social discomfort with the right to die with dignity. This cultural and terminological barrier may hinder acceptance of life-support withdrawal.
4. Challenging Process for creation of living will- Creation of a living is a complex process involving documentation and verification by witnesses, executors, and a notary.
5. Potential for Delayed Decision-Making- The multistep process involving both medical boards, family or surrogate consent, and judicial notification could delay the withdrawal of life-support process. This impinges on the right to die with dignity.
6. Emotional and Ethical Strain on Families and Physicians- The shared decision-making requirement, while intended to protect patient rights, places emotional and ethical strain on families and doctors.
What Should be the Way Forward?
1. Legislative Clarity and Support- Lawmakers should consider enacting legislation that defines and governs life-support withdrawal in terminal cases. This would further affirm the Right to die with dignity.
2. Educating and Training Medical Professionals- Medical professionals should be provided robust training on the ethical, legal, and procedural aspects of withdrawing life-sustaining treatment.
3. Streamlining the Living Will Process- The process for creating and validating a living will should be simplified, and made accessible to people from diverse backgrounds.
4. Raising Public Awareness- Increased awareness will enable families to make informed choices aligned with their loved ones’ wishes and alleviate unnecessary suffering.
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