Advanced Medical Directive: Taking control of end-of-life decisions (Part 1)

What decisions can be made on your behalf, in case you are unable to verbally express your choices owing to deteriorating health? Advocate Shiv Kumar, who is a senior advocate of the Karnataka High Court—and also a member of Silver Talkies—explains the concept of the advanced medical directive (AMD) in the absence of a legally-recognised concept of a Living Will in India.

“It is essential that we get comfortable with the concept of death, as well as preparing for end of life,” he noted, while explaining the difference between existing frameworks that address wishes regarding end-of-life preferences. “A will is a testamentary document, which means that it comes into effect after death, and pertains to disposal of one’s assets following death. The personal law of succession applies if there was no will created; with different religions following different succession laws,” he explained.

On the other hand, the concept of a Living Will is still not recognised in India. But it came to public awareness in 2018 because of a case that had reached the Supreme Court. Advocate Kumar says that India’s highest court has been attempting to broaden the concept of the right to life to include the right to die with dignity. It was the case of Aruna Shanbag, who had been living in a permanent vegetative state, that prompted the Court to consider the ethical dimensions of euthanasia. In the absence of active euthanasia in India—which means administering a lethal drug to end life—the concept of an advanced medical directive (AMD) was created.

AMD does not cover disposition of assets or property; neither does it address organ or cadaver donation. AMD is only restricted to withdrawal or withholding of medical treatment, or in specific terms, “What I want or don't want to keep me alive for years on end.” Advocate Kumar said that in absence of legislation, AMD is only governed by guidelines by SC, and thus prevents any possible criminalisation of the doctor by the kin of the person executing the AMD.

Advocate Kumar acknowledges that a person’s family views come into play when a person wishes to not prolong their life and suffering. Hence, he says, it is vital that a person has an honest conversation with the family before drafting the AMD.

According to the guidelines, a person above the age of 18 can draft the AMD, and needs to be in a sound and healthy state of body and mind when creating it. “A person in pain may not make sound decisions about making and executing AMD; the person must be able to comprehend the purpose and legal consequences of the AMD,” Advocate Kumar explained, adding that it has to be created voluntarily, and without any force or compulsion.

The document needs to clearly specify when no medical treatment shall be given, towards preventing delay of death that would prolong suffering and add to the person’s indignity. It needs to detail the unambiguous terms of the circumstances in which withholding or withdrawal of medical treatment can be resorted to. At the same time, the right to create the AMD carries with it the right to withdraw it. Explaining this with an example, Advocate Kumar says, “We have been given the freedom of speech, but the law does not say that you must speak. The law entitles you the freedom to not speak too.”

The AMD should specify a guardian of the document to execute it, which is necessary in case the person goes into a coma or if their cognitive abilities have declined. It should be given to the doctor or medical institution.

According to the guidelines of the SC, the AMD needs to be signed in the presence of two independent witnesses who do not have any vested interest in the property of the person and are substantially younger in age. It has to be signed before a gazetted officer or Notary Public (who is appointed by the central or state government to sign documents or affidavits). Advocate Kumar said that the Notary is authorised to ask questions to ascertain that the AMD was created voluntarily, and that they must make an entry in their book about this, and assign a number to the document, to thus give the document legal validity. “It is perfectly fine if the Notary might ask the family to step outside the office to speak only with the person creating the AMD, to verify that it was not created under any duress. This is a legal necessity and a family should not view this as an offence of trust,” he explained.

The notarised copy must be given to the assigned guardian; don’t put it under the pillow or lock it away! “Inform your family that the AMD exists and the guardian assigned to it; the family doctor should also be given a copy, as well as the local municipal authority, which is the legal custodian of the document,” he said, adding that currently, only Maharashtra has 170 custodians at the grassroots level. “In Karnataka, we are taking steps to move the High Court to appoint custodians.”

In part 2, we will look at the process of the actual execution of the AMD, when the time comes for it.