Implementation of Supreme Court Judgment on Advance Medical Directives

In keeping with the right to Privacy the Supreme Court has delivered a landmark judgment for patients facing terminal illness. Such patients and their families are often subjected to unwanted medical interventions that serve only to render the dying process agonizing. Medical ethics and standards in such circumstances involve offering the choice of withholding or withdrawing such interventions while shifting the focus of care to providing comfort. Autonomy is a fundamental Right and should therefore extend to the time when the patient is incompetent. This judgment reiterates such Right to all in relation to their bodily and personal integrity while facing death.

The honorable judges have established the moral and constitutional basis of the fundamental right to Autonomy and have also recommended an operational pathway. We, at the Indian Association of Palliative Care applaud the direction provided by the Supreme Court judgment.

We established over twenty-five years ago and represent a multitude of professionals working in palliative care, including doctors, nurses, counselors and volunteers. Given our experience, we believe that procedure laid down by the Supreme Court will cause serious practical difficulties and defeat the very purpose of the judgment.

We would also like to point out serious practical difficulties with the implementation of the procedure laid down by the Supreme Court. This statement recommends some modifications to this procedure in an attempt to give effect to the spirit of the Supreme Court’s remarkable judgment.

In simple terms this judgment effectively realises a fundamental common law and constitutional principle. This principle is that any authentic expression of an individual’s wishes with regard to his/her health care, including the refusal of life-sustaining medical treatment, must be respected.

TERMINOLOGY: For the purposes of this note, the resource will be the ICMR document on ‘Definition of terms used in limitation of treatment and providing Palliative Care at the End of Life’ available at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5930529/. This is because media persons and legal professionals often use anachronistic and obsolete terms. For instance the term ‘passive euthanasia’ is hardly used anywhere else in the world.

ADVANCE (MEDICAL) DIRECTIVES: A statement made by a person with the decision-making capacity stating his/her wishes regarding how to be treated or not treated at a stage when s/he loses such capacity. Advance directives include living wills or health care proxies and become operational only after the person loses capacity

The SC judgment has detailed the following procedure for making ‘living wills’ operational in India:

  1. It should be a ‘written document which ‘should clearly indicate the decision relating to the circumstances in which withholding (WH) or withdrawal (WD) of medical treatment can be resorted to’. It ‘should be in specific terms and the instructions should be absolutely clear and unambiguous’.
  2. The document ‘should be signed by the executor in the presence of two attesting witnesses, and countersigned by the jurisdictional Judicial Magistrate First Class (JMFC), so designated by the concerned District Judge.
  3. The JMFC also has archival and dissemination responsibilities. S/he will preserve one copy in both paper and digital format, hand over one copy to the Registry of the jurisdictional District Court and inform the immediate family members about the existence of this document. One copy will also be handed over to the competent (designated) officer of the local authority (Municipal Corporation/Municipality/Panchayat) and one to the family physician if any.
  4. In the event of terminal illness, the physician concerned must ‘ascertain the genuineness and authenticity thereof from the jurisdictional JMFC before acting upon the same’.

The difficulties inherent in the SC mandated procedure are self-explanatory, but need to be specified:

  1. The requirement for a detailed statement of circumstances in which WH/WD can take place is problematic. It requires fairly sophisticated medical knowledge and is difficult for the average citizen. It is important to reiterate a statement made above: the fundamental common law and constitutional principle is that any authentic expression of an individual’s wishes with regard to his/her health care must be respected. As of now, we endorse the Supreme Court’s view that this will have to be embodied in a written document, but we believe that further specification is unnecessary. Instead, a simple statement declaring the individual’s desire not be submitted to life-sustaining treatment in the event of a terminal illness or other state resulting in the permanent loss of consciousness (for example, brain stem death, persistent vegetative state, coma) should suffice.
  2. The requirement for a JMFC’s validation of the executor’s signature is onerous. Other legal documents in India, such as testamentary documents, do not require a similar endorsement. A notary’s confirmation of an advance medical directive should suffice. The requirement for two witnesses however is a worldwide standard for this kind of document and should be retained.
  3. The subordinate judiciary is overburdened and the archiving and dissemination responsibilities in relation to Advance Medical Directives required of it by the Supreme Court are likely to be difficult to implement.
  4. Additionally, such archiving and dissemination is highly likely to lead to situations in which the individual’s privacy can be violated. However, in keeping with the spirit of Advance Care Planning, the executors of advance directives should be encouraged to share these documents with their family physicians, family members, as well as persons appointed as their healthcare power of attorney.

The Indian Association of Palliative Care respectfully appeals to the Hon’ble Supreme Court to consider the procedural alterations that we have suggested in keeping with national and international professional consensus and jurisdictions elsewhere in the world.

Mary Ann Muckaden

President, Indian Association of Palliative Care

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