Living Will

Introduction:

On March 9, 2018 the Supreme Court in a landmark judgement (Common Cause, a registered society v Union of India & others) recognised that a terminally ill patient or a person in a persistent vegetative state has the right to die with dignity (Article 21 of the Indian Constitution). To do this, the person will have to execute what is called a ‘living will’.

Meaning and Concept:

According to Indian Journal of Medical Ethics, an advance directive (AD) or living will (LW) is a document prepared by a person to instruct doctors and caregivers on what must be done and not done if and when that person is no longer able to take decisions on his own health on account of illness or incapacity. Such a document is important because a person’s life may reach a point at which attempts to prolong it are futile and may only compromise the dignity and quality of life.

An AD or a living will also contain the directions related to organ donation. Donation forms are signed but a communication is not made to families. More often than not, relatives of the deceased do not know and therefore do not take timely action.

This document can also define the source of funds to meet medical expenses. It can clearly state that testator’s own savings and wealth be used instead of burdening family members.

An AD is not to be confused with a normal “will”, which becomes operational after the death of an individual. An AD becomes operational when the individual is still alive, though incapacitated, and is, therefore, also known as the “living will”.

Another type of advance medical directive is medical power of attorney. It is a document which allows an individual (principal) to appoint a trusted person (agent) to take health care decisions when the principal is not able to take such decisions.

Who can execute the Advance Directive and how?

1. It can be executed only by an adult (age 18+) who is of a sound mind and is able to communicate, relate and comprehend the purpose and consequences of executing the document.
2. It must be voluntarily executed having full knowledge or information and not under any coercion, inducement or compulsion.
3. It shall be in writing.
4. If there is more than one valid Advance Directive, none of which have been revoked, the most recently signed Advance Directive will be considered valid and will be given effect to.

What should it contain?

1. Living Will is to be prepared as per the guidelines of the Supreme Court
2. It should clearly mention the circumstances in which withholding or withdrawal of medical treatment can be resorted to.
3. If the person wishes to resort to organ donation, it should contain his clear intention and directions for the same. The person should also name the organs to be donated.
4. The terms of the documents must be absolutely clear and unambiguous.
5. It should disclose that the executor has understood the consequences of executing such a document.
6. It should specify the name of a guardian or close relative who will be authorized to give consent to refuse or withdraw medical treatment in a manner consistent with the Advance Directive.

How should it be recorded and preserved?

1. It should be signed by the executor in the presence of two attesting witnesses (near relatives) and countersigned by the jurisdictional Judicial Magistrate of First Class (JMFC) so designated by the concerned District Judge.
2. The witnesses and the jurisdictional JMFC shall record their satisfaction that the executor is in a fit state of mind and has made the document voluntarily, without any coercion or inducement or compulsion.
3. The JMFC shall preserve one copy of the document in his office, in addition to keeping it in digital format.
4. The JMFC shall forward one copy of the document to the Registry of the jurisdictional District Court for being preserved. Additionally, the Registry of the District Judge shall retain the document in digital format.
5. The JMFC shall inform the immediate family members of the executor about the execution of the document.
6. A copy shall be given to the competent official of the local Government or the Municipal Corporation or Municipality or Panchayat, who shall be the custodian of the said document.
7. The JMFC shall handover copy of the Advance Directive to the family physician, if any.

When and by whom can it be given effect to?

1. It is given effect to when the executor becomes terminally ill and is undergoing prolonged medical treatment with no hope of recovery and cure of the ailment or in a permanent vegitative state
2. In that event, the doctor should first ascertain the genuineness and authenticity of the document from the jurisdictional JMFC before acting upon it.
3. The instructions in the document must be given due weight by the doctors. However, it should be implemented only after being fully satisfied that the executor is terminally ill and is surviving on life support and there are no chances of him coming out of that stage.
4. The doctor shall inform the executor or his guardian / close relative, about the nature of illness, the availability of medical care and the consequences of remaining untreated.
5. The physician/hospital where the executor has been admitted for medical treatment shall then constitute a Medical Board of experts from the fields of general medicine, cardiology, neurology, nephrology, psychiatry, oncology to examine the patient and give its decision. This decision shall be regarded as a preliminary opinion.
6. The Hospital Medical board shall inform its decision to the jurisdictional Collector. The jurisdictional Collector shall then constitute a Medical Board comprising the Chief District Medical Officer and three expert doctors (who were not members of the previous Medical Board of the hospital). They shall jointly visit the hospital where the patient is admitted and if they agree with the initial decision of the Medical Board of the hospital, they may endorse the certificate to carry out the instructions given in the Advance Directive.
7. Then the consent of the executor or his guardian should be obtained regarding the instructions given in the Advance Directive.
8. The Medical Board shall convey the decision to the jurisdictional JMFC. The JMFC shall visit the patient at the earliest and, after examining all aspects, authorise the implementation of the decision of the Board.
9. It will be open to the executor to revoke the document at any stage before it is acted upon and implemented.

What if permission is refused by the Medical Board?

1. If permission to withdraw medical treatment is refused by the Medical Board, it is open to the executor of the Advance Directive or his family members or even the treating doctor or the hospital staff to approach the High Court by way of writ petition under Article 226 of the Constitution.
2. If such application is filed before the High Court, the Chief Justice of the said High Court shall constitute a Division Bench to decide upon grant of approval or to refuse the same.
3. The High Court shall hear the application expeditiously after hearing the State counsel. It would be open to the High Court to constitute Medical Board to examine the patient and submit report regarding the instructions contained in the Advance Directive.
4. It is mandatory for the High Court to render its decision at the earliest because these matters cannot be delayed and shall keep in mind the principle of “best interests of the patient”.

Revocation or inapplicability of Advance Directive:

1. An individual may withdraw/alter the Advance Directive at any time when he/she has the capacity to do so and by following the same procedure as given for recording of Advance Directive.
2. Withdrawal/revocation of an Advance Directive must be in writing.
3. An Advance Directive shall not be applicable to the treatment in question if there are reasonable grounds for believing that circumstances exist which the person making the directive did not anticipate at the time of the Advance Directive and which would have affected his decision had he anticipated them.
4. If the Advance Directive is not clear and ambiguous, the concerned Medical Boards shall not give effect to it and, in that event, the guidelines meant for patients without Advance Directive shall be followed.

Where there is no Advance Directive:

In cases where there is no Advance Directive, the procedure and safeguards to be followed are same as applied to cases where Advance Directives are in existence and in addition there to, the following procedure shall be followed: –

1. In cases where the patient is terminally ill and there is no hope of being cured, the doctor may inform the hospital which shall constitute a Hospital Medical Board in the manner indicated earlier.
2. The Hospital Medical Board shall discuss with the family physician and the family members and record the minutes of the discussion in writing.
3. The family members shall be informed of the pros and cons of withdrawal or refusal of medical treatment to the patient and if they give consent in writing, then the Hospital Medical Board may certify the course of action to be taken.
4. The Hospital Medical board shall inform its decision to the jurisdictional Collector. The jurisdictional Collector shall then constitute a Medical Board comprising the Chief District Medical Officer and three expert doctors. They shall jointly visit the hospital where the patient is admitted and if they concur with the initial decision of the Medical Board of the hospital, they may endorse the certificate to carry out the instructions given in the Advance Directive. The decision shall be informed to the JMFC and the family members of the patient.
5. The JMFC shall visit the patient at the earliest and verify the medical reports, examine the condition of the patient, discuss with the family members of the patient and, if satisfied in all respects, may endorse the decision to withdraw or refuse further medical treatment to the patient.
6. If the decision of the Medical Board to withdraw medical treatment does not match with the decision of the Hospital Medical Board, it is open to the executor of the Advance Directive or his family members or even the treating doctor or the hospital staff to approach the High Court by way of writ petition under Article 226 of the Constitution. Post that, the same procedure is to be followed as mentioned above.

Conclusion :

The process for registration and execution may look cumbersome and ardous however is in the best interest of the Executor to avoid any misinterpretation, misuse or abuse. The first applcation in the Pune District for registration of the Living Will was made by us in 2019 which set the law in motion and resulted into the the appointment / designating a JMFC Court to look into such applications pursuant to the orders of the Hon’ble District Judge in consultation with the the Hon’ble High Court Mumbai.

Vaishali Bhagwat
Advocate