By Dr Isra Black
In September 2024, the Ministry of Health and Family Welfare (MoHFW) issued its draft guidelines for withdrawal of life support in terminally-ill patients. The guidelines attempt to translate into clinical reality the streamlined procedure for withholding or withdrawing life-sustaining treatment set out by the Supreme Court in its order of January 24, 2023, clarifying the judgment in Common Cause vs Union of India. The guidelines reveal important features of the Supreme Court’s directions and ambivalent recognition of the patient’s right to refuse medical treatment.
The Supreme Court’s 2018 Common Cause judgment gives legal recognition to Advance Medical Directives (AMDs). An AMD is a declaration made by a person with decision-making capacity, stating their wish for care and treatment in the event they lack the said capacity—including what medical procedures they refuse. Common Cause also provides a detailed procedural framework for withholding or withdrawing life-sustaining treatment for patients who lack decision-making capacity—whether possessed of an AMD or not.
In the proceedings leading to its 2023 order, the Supreme Court heard arguments going into the complexity of clinical and (in particular) judicial oversight required to establish the validity and applicability of AMDs, as well as to forego treatment. This led to the aim of Common Cause—respect for the right to live with dignity protected under Article 21 of the Constitution—“being impaired, if not completely defeated”. Effectively, the burdens of making an AMD or gaining approval for abstention from treatment were too great. Accordingly, the Supreme Court by its 2023 order simplified the process for making AMDs as well as the process for withholding or withdrawing treatment. Two tiers of clinical approval (by a consensus of practitioners at each layer) for each instance of foregoing life support remain. The judicial role, however, is now limited to High Court’s adjudication of disputes arising from refusal to withhold or withdraw treatment, as well as judicial magistrate’s receipt of notification of abstention from treatment.
The MoHFW guidelines are in draft and should be taken as such. We should not make too much of infelicities in the text at this stage in their production. However, the draft provides a helpful illustration of the dangers that lie in the translation of legal norms into practical, clinical guidance. Take the definitions of withdrawal and withholding of treatment, respectively, in the guidelines. Withdrawal and withholding are value-laden concepts; to count as withdrawal or withholding, the relevant practice must align with the patient’s best interests: the treatment to stop or not start must be non-beneficial or likely to harm the patient. For withdrawal to qualify as in the patient’s best interests, the guidelines state that the following conditions must apply:
However, the guidelines (if all must be met in every case) fail to capture the Supreme Court’s directions in Common Cause. Withdrawal of treatment will be permissible on various combinations of the above four conditions. It is likely that only conditions (c) and (d) are always required. Condition (d) includes (c) since (c) is both a substantive (refusal was made) and procedural requirement. Either of condition (a) or (b), together with (d) will suffice to make withdrawal lawful, since these are different ways of capturing the Supreme Court’s prescription in Common Cause that: “the patient is terminally-ill and undergoing prolonged treatment in respect of ailment which is incurable or where there is no hope of being cured”.
In respect of withholding, the guidelines state that in order for the practice to be consistent with the patient’s best interests, “[t]he same above three conditions [as for withdrawal] must apply”. Presumably, this means conditions (b)-(d), since there is limited opportunity for a brainstem dead person who is not already on life support to remain alive. Yet the lack of precision invites confusion.
If the guidelines for making respect for AMDs and withholding and withdrawal of medical treatment are to align with the directions of the Supreme Court in Common Cause (as amended), more rigour in the translation of the legal norms is required. Failure to do so presents risks for clinicians—who have a right to legal certainty—and patients—whose constitutional rights are at stake.
According to the guidelines, a principle outlined by the Supreme Court in this domain is that “an adult patient capable of taking healthcare decisions may refuse [life-sustaining treatments] even if it results in death”. Is this true? So far as contemporaneous (as compared to advance) refusals of treatment are concerned, the weight of Supreme Court’s authority—namely Aruna Shanbaug vs Union of India [2011] 4 SCR 1057 and Common Cause—suggests alignment of the Indian jurisprudence with other common law family jurisdictions: a person adequately informed of their options, possessing decision-making capacity and acting voluntarily can validly refuse any treatment, including that which sustains life.
It is not obvious that the same, substantively extensive, right to refuse treatment obtains in Indian law in respect of wishes stated in an AMD. In Common Cause, the Supreme Court qualifies the right to advance refusal: doctors would be bound by the choice of self-determination made by the patient who is terminally-ill and undergoing a prolonged medical treatment, or is surviving on life support, subject to being satisfied that the illness of the patient is incurable and there is no hope of his being cured. Any other consideration cannot pass off as being in the best interests of the patient.
This dictum appears to rule out the possibility of a person refusing treatment via an AMD who is not currently terminally-ill or dependent on life support and whose condition is not incurable or hopeless. This deprives a not inconsiderable pool of patients of the right to refuse treatment in advance. Some patients may not be terminally-ill, but will become so if they refuse treatment; others may be terminally-ill, but not incurably or hopelessly so. A person refusing antibiotics for an infection might fall into either of these categories.
Therefore, the right to refuse treatment in advance under Article 21 of the Constitution and as developed by the Supreme Court in Common Cause is significant, yet limited; it is merely a “right to a smoothened dying process”. The Supreme Court has created a jurisprudential puzzle: why should the right to refuse treatment contemporaneously be more robust than the right to refuse in advance?
—The writer is an Associate Professor in Health Law at UCL Faculty of Laws
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In September 2024, the Ministry of Health and Family Welfare (MoHFW) issued its draft guidelines for withdrawal of life support in terminally-ill patients. The guidelines attempt to translate into clinical reality the streamlined procedure for withholding or withdrawing life-sustaining treatment set out by the Supreme Court in its order of January 24, 2023, clarifying the judgment in Common Cause vs Union of India. The guidelines reveal important features of the Supreme Court’s directions and ambivalent recognition of the patient’s right to refuse medical treatment.
The Supreme Court’s 2018 Common Cause judgment gives legal recognition to Advance Medical Directives (AMDs). An AMD is a declaration made by a person with decision-making capacity, stating their wish for care and treatment in the event they lack the said capacity—including what medical procedures they refuse. Common Cause also provides a detailed procedural framework for withholding or withdrawing life-sustaining treatment for patients who lack decision-making capacity—whether possessed of an AMD or not.
In the proceedings leading to its 2023 order, the Supreme Court heard arguments going into the complexity of clinical and (in particular) judicial oversight required to establish the validity and applicability of AMDs, as well as to forego treatment. This led to the aim of Common Cause—respect for the right to live with dignity protected under Article 21 of the Constitution—“being impaired, if not completely defeated”. Effectively, the burdens of making an AMD or gaining approval for abstention from treatment were too great. Accordingly, the Supreme Court by its 2023 order simplified the process for making AMDs as well as the process for withholding or withdrawing treatment. Two tiers of clinical approval (by a consensus of practitioners at each layer) for each instance of foregoing life support remain. The judicial role, however, is now limited to High Court’s adjudication of disputes arising from refusal to withhold or withdraw treatment, as well as judicial magistrate’s receipt of notification of abstention from treatment.
The MoHFW guidelines are in draft and should be taken as such. We should not make too much of infelicities in the text at this stage in their production. However, the draft provides a helpful illustration of the dangers that lie in the translation of legal norms into practical, clinical guidance. Take the definitions of withdrawal and withholding of treatment, respectively, in the guidelines. Withdrawal and withholding are value-laden concepts; to count as withdrawal or withholding, the relevant practice must align with the patient’s best interests: the treatment to stop or not start must be non-beneficial or likely to harm the patient. For withdrawal to qualify as in the patient’s best interests, the guidelines state that the following conditions must apply:
- Any individual declared brainstem dead.
- Medical prognostication and considered opinion that patient’s disease condition is advanced and not likely to benefit from aggressive therapeutic interventions.
- Patient/surrogate documented informed refusal, following prognostic awareness, to continue life support.
- Compliance with procedure prescribed by the Supreme Court.
However, the guidelines (if all must be met in every case) fail to capture the Supreme Court’s directions in Common Cause. Withdrawal of treatment will be permissible on various combinations of the above four conditions. It is likely that only conditions (c) and (d) are always required. Condition (d) includes (c) since (c) is both a substantive (refusal was made) and procedural requirement. Either of condition (a) or (b), together with (d) will suffice to make withdrawal lawful, since these are different ways of capturing the Supreme Court’s prescription in Common Cause that: “the patient is terminally-ill and undergoing prolonged treatment in respect of ailment which is incurable or where there is no hope of being cured”.
In respect of withholding, the guidelines state that in order for the practice to be consistent with the patient’s best interests, “[t]he same above three conditions [as for withdrawal] must apply”. Presumably, this means conditions (b)-(d), since there is limited opportunity for a brainstem dead person who is not already on life support to remain alive. Yet the lack of precision invites confusion.
If the guidelines for making respect for AMDs and withholding and withdrawal of medical treatment are to align with the directions of the Supreme Court in Common Cause (as amended), more rigour in the translation of the legal norms is required. Failure to do so presents risks for clinicians—who have a right to legal certainty—and patients—whose constitutional rights are at stake.
According to the guidelines, a principle outlined by the Supreme Court in this domain is that “an adult patient capable of taking healthcare decisions may refuse [life-sustaining treatments] even if it results in death”. Is this true? So far as contemporaneous (as compared to advance) refusals of treatment are concerned, the weight of Supreme Court’s authority—namely Aruna Shanbaug vs Union of India [2011] 4 SCR 1057 and Common Cause—suggests alignment of the Indian jurisprudence with other common law family jurisdictions: a person adequately informed of their options, possessing decision-making capacity and acting voluntarily can validly refuse any treatment, including that which sustains life.
It is not obvious that the same, substantively extensive, right to refuse treatment obtains in Indian law in respect of wishes stated in an AMD. In Common Cause, the Supreme Court qualifies the right to advance refusal: doctors would be bound by the choice of self-determination made by the patient who is terminally-ill and undergoing a prolonged medical treatment, or is surviving on life support, subject to being satisfied that the illness of the patient is incurable and there is no hope of his being cured. Any other consideration cannot pass off as being in the best interests of the patient.
This dictum appears to rule out the possibility of a person refusing treatment via an AMD who is not currently terminally-ill or dependent on life support and whose condition is not incurable or hopeless. This deprives a not inconsiderable pool of patients of the right to refuse treatment in advance. Some patients may not be terminally-ill, but will become so if they refuse treatment; others may be terminally-ill, but not incurably or hopelessly so. A person refusing antibiotics for an infection might fall into either of these categories.
Therefore, the right to refuse treatment in advance under Article 21 of the Constitution and as developed by the Supreme Court in Common Cause is significant, yet limited; it is merely a “right to a smoothened dying process”. The Supreme Court has created a jurisprudential puzzle: why should the right to refuse treatment contemporaneously be more robust than the right to refuse in advance?
—The writer is an Associate Professor in Health Law at UCL Faculty of Laws
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