Though Living Will is a widely accepted practice in many countries across the World, India has now breezed upon this concept to better suit it’s culture as an accepted common law practice and is looking to build a system that cannot be misused but at the same time protect its Citizen’s Fundamental Right to Live with Dignity and hope.
1. With advances in medical science, new treatments, and procedures evolving consistently there has been a significant increase in the chances of people surviving even after suffering a life-threatening disease or accident. With better longevity in life, palliative care has been the catchword for terminal illness when it comes to living with dignity. On one hand, these treatments give a ray of hope to a person to be cured and live life normally and on the other hand they can also prolong their dying process with the help of life-sustaining treatments like using ventilators, feeding tubes, or providing artificial hydration and pain medication etc.
2. Healthcare professionals, who has to provide or perform these treatments or procedures, have to take consent from the patient undergoing such treatment or under palliative care and in the event, such patient is unable to communicate or give consent by himself, then such consent is required from from his kith and kin, legal guardian, etc. Such patients now have a legal right to autonomy enshrined within Article 21 of the Indian Constitution (Protection of Life and Personal Liberty) and therefore can decide against availing a recommended treatment.
3. Some people/patients may choose not to avail a recommended treatment for religious reasons while others may consider it too risky or expensive. Sometimes even if the treatment is likely to work, there is medically little or no chance it will get them back to a quality of life they could enjoy or accept. However, when a person is suffering from a catastrophic accident or illness he/she is generally unconscious or unable to communicate and is deprived of making instantaneous decisions regarding their medical treatment that they wish to receive. Either way, these situations can place a burden—both emotionally and financially—upon the person's loved ones. Whatever the reason, there is an allowance under the law for such people to pre-empt their critical care treatment when they are qualified with full mental capacity to decide on how they wish to be treated if such an eventuality occurs.
4. It becomes important for people to therefore plan their future healthcare, especially at a time when they may no longer be able to make decisions or communicate their decisions. Many people prefer to have a say and be clear about certain components of medical care they wish to or not to have if such an eventuality occurs. It may be a personal preference and choice, not to have invasive medical procedures aimed at restoration like chest compressions, mechanical ventilation, drugs to increase blood pressure, invasive tubes, artificial machines aimed at keeping a person alive at the end of their life.
5. By planning in advance, a person can get the medical care he/she desires while relieving the burden on their legal guardians/care-takers of making major medical decisions during moments of grief or crisis. Advance Directive / a Living Will therefore can help reduce confusion and disagreements about medical care.
6. A ‘Living Will’ is a legal document through which any mentally sound person can preempt his/her medical treatment in a scenario of medical crisis. Living Will provides people the opportunity to think about, talk about, and write down their wishes, preferences, priorities, along with exclusions regarding their medical treatment thereby helping loved ones and medical personnel make important decisions during a medical crisis. Having an advance directive/Living Will in place ensures that a person’s wishes regarding their health care are known and carried out legally and medically by healthcare professionals. A Living will is a legal document entailing the concept of ‘Advance Medical Directive’.
Advance Directive for health care is practiced under various names in different countries; however, the objective largely is the same - to empower decision making regarding treatment at terminal stages of the patient.
Living Will – Advance Medical Directive – Enabling Dignity of Life in India
7. The concept of ‘living will’ was first introduced and proposed by an American attorney, Luis Kutner, in 1969 in the article ‘Due Process of Euthanasia: The Living Will, A Proposal’. Discussing Euthanasia and mercy killing, Mr. Luis Kutner wanted to devise a method to facilitate the rights of people at their last stages to control decisions about their medical care and deny life-sustaining treatments when they are unable to communicate.
8. The promoters of Advance Medical Directive were of the view that the concept of patient autonomy for incompetent (medically unstable) patients can be given effect to, by giving room to new methods by which such patients can beforehand communicate their choices, which are made while they are legally competent.
9. To overcome the difficulty faced in the case of patients who are unable to express their wishes at the time of taking the decision, the concept of Advance Medical Directive emerged in various countries. Advance Directive for health care is practiced under various names in different countries; however, the objective largely is the same - to empower decision making regarding treatment at terminal stages of the patient. USA and various countries in Europe have brought about legislation to explain a living will, what it entails, and slowly many legislations are looking to adopt this evolving concept and bring about general awareness of Advance Directive.
10. In India, there is no concrete legal framework to regulate a Living Will. The concept of living will, was first discussed in the case of Aruna Ramchandra Shanbaug vs Union Of India & Ors, reported in (2011) 4 SCC 454. The said petition was filed before the Supreme Court seeking a direction to the hospital to stop feeding Ms. Aruna Shanbaug and allow her to die peacefully since she was in a Persistent Vegetative State (PVS) since she had been sexually assaulted in 1973. Though the said case was dismissed, the Supreme Court in its landmark opinion discussed the issue of passive euthanasia and allowed passive euthanasia in India by issuing a set of broad guidelines. It defined “passive euthanasia” as withdrawing treatment with a deliberate intention of causing the patient’s death. The Supreme Court also held that passive euthanasia is allowed if the doctors’ act based on notified medical opinion and withdraw life support in the patient's best interest. However, rather than leaving the decision to withdraw the life support system entirely at the discretion of the doctors or the relatives of the patient, the Supreme Court held that the approval of the relevant High Court would be necessary in every case before withdrawing the life support system.
11. Thereafter, in 2018, the Supreme Court of India in the case of Common Cause (A regd. Society) vs Union of India and Ors, reported in (2018) 5 SCC 1, recognized that just as the citizens have the fundamental right to live with dignity, they should also have the legal right to die with dignity. The Supreme Court held that an individual of free and competent mental state is entitled to decide whether or not to accept medical treatment including withdrawal from life-saving devices. An individual who is competent and able to take such decisions can execute an advance medical directive by following safeguards as laid down by the Supreme Court. An individual who is in a sound and competent state of mind can specify the nature of medical intervention to be adopted or not adopted, through an Advance Directive in writing. The guidelines/safeguards as provided by the Supreme Court are provided below:
(a) Who can execute the Advance Directive and how?
(i) The Advance Directive can be executed only by an adult who is of a sound and healthy state of mind and in a position to communicate, relate and comprehend the purpose and consequences of executing the document.
(ii) It must be voluntarily executed and without any coercion or inducement or compulsion and after having full knowledge or information.
(iii) It should have characteristics of an informed consent given without any undue influence or constraint.
(iv) It shall be in writing clearly stating as to when medical treatment may be withdrawn or no specific medical treatment shall be given which will only have the effect of delaying the process of death that may otherwise cause him/her pain, anguish and suffering and further put him/her in a state of indignity.
(b) What should it contain?
(i) It should clearly indicate the decision relating to the circumstances in which withholding or withdrawal of medical treatment can be resorted to.
(ii) It should be in specific terms and the instructions must be absolutely clear and unambiguous.
(iii) It should mention that the executor may revoke the instructions/authority at any time.
(iv) It should disclose that the executor has understood the consequences of executing such a document.
(v) It should specify the name of a guardian or close relative who, in the event of the executor becoming incapable of taking decision at the relevant time, will be authorized to give consent to refuse or withdraw medical treatment in a manner consistent with the Advance Directive.
(vi) In the event that there is more than one valid Advance Directive, none of which have been revoked, the most recently signed Advance Directive will be considered as the last expression of the patient’s wishes and will be given effect to.
(c) How should it be recorded and preserved? Recommendations by Supreme Court
(i) The document should be signed by the executor in the presence of two attesting witnesses, preferably independent, and countersigned by the jurisdictional Judicial Magistrate of First Class (JMFC) so designated by the concerned District Judge.
(ii) The witnesses and the jurisdictional JMFC shall record their satisfaction that the document has been executed voluntarily and without any coercion or inducement or compulsion and with full understanding of all the relevant information and consequences.
(iii) The JMFC shall preserve one copy of the document in his office, in addition to keeping it in digital format.
(iv) 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.
(v) The JMFC shall cause to inform the immediate family members of the executor, if not present at the time of execution, and make them aware about the execution of the document.
(vi) A copy shall be handed over to the competent officer of the local Government or the Municipal Corporation or Municipality or Panchayat, as the case may be. The aforesaid authorities shall nominate a competent official in that regard who shall be the custodian of the said document.
(vii) The JMFC shall cause to handover copy of the Advance Directive to the family physician, if any.
(d) When and by whom can it be given effect to?
(i) In the event the executor becomes terminally ill and is undergoing prolonged medical treatment with no hope of recovery and cure of the ailment, the treating physician, when made aware about the Advance Directive, shall ascertain the genuineness and authenticity thereof from the jurisdictional JMFC before acting upon the same.
(ii) The instructions in the document must be given due weight by the doctors. However, it should be given effect to only after being fully satisfied that the executor is terminally ill and is undergoing prolonged treatment or is surviving on life support and that the illness of the executor is incurable or there is no hope of him/her being cured.
(iii) If the physician treating the patient (executor of the document) is satisfied that the instructions given in the document need to be acted upon, he shall inform the executor or his guardian / close relative, as the case may be, about the nature of illness, the availability of medical care and consequences of alternative forms of treatment and the consequences of remaining untreated. He must also ensure that he believes on reasonable grounds that the person in question understands the information provided, has cogitated over the options and has come to a firm view that the option of withdrawal or refusal of medical treatment is the best choice.
(iv) The physician/hospital where the executor has been admitted for medical treatment shall then constitute a Medical Board consisting of the Head of the treating Department and at least three experts from the fields of general medicine, cardiology, neurology, nephrology, psychiatry or oncology with experience in critical care and with overall standing in the medical profession of at least twenty years who, in turn, shall visit the patient in the presence of his guardian/close relative and form an opinion whether to certify or not to certify carrying out the instructions of withdrawal or refusal of further medical treatment. This decision shall be regarded as a preliminary opinion.
(v) In the event the Hospital Medical Board certifies that the instructions contained in the Advance Directive ought to be carried out, the physician/hospital shall forthwith inform the jurisdictional Collector about the proposal. The jurisdictional Collector shall then immediately constitute a Medical Board comprising the Chief District Medical Officer of the concerned district as the Chairman and three expert doctors from the fields of general medicine, cardiology, neurology, nephrology, psychiatry or oncology with experience in critical care and with overall standing in the medical profession of at least twenty years (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 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.
(vi) The Board constituted by the Collector must beforehand ascertain the wishes of the executor if he is in a position to communicate and is capable of understanding the consequences of withdrawal of medical treatment. In the event the executor is incapable of taking decision or develops impaired decision-making capacity, then the consent of the guardian nominated by the executor in the Advance Directive should be obtained regarding refusal or withdrawal of medical treatment to the executor to the extent of and consistent with the clear instructions given in the Advance Directive.
(vii) The Chairman of the Medical Board nominated by the Collector, that is, the Chief District Medical Officer, shall convey the decision of the Board to the jurisdictional JMFC before giving effect to the decision to withdraw the medical treatment administered to the executor. The JMFC shall visit the patient at the earliest and, after examining all aspects, authorize the implementation of the decision of the Board.
(viii) It will be open to the executor to revoke the document at any stage before it is acted upon and implemented.
(e) What if permission is refused by the Medical Board?
(i) If permission to withdraw medical treatment is refused by the Medical Board, it would be 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. 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. The High Court will be free to constitute an independent Committee consisting of three doctors from the fields of general medicine, cardiology, neurology, nephrology, psychiatry or oncology with experience in critical care and with overall standing in the medical profession of at least twenty years.
(ii) The High Court shall hear the application expeditiously after affording opportunity to the state counsel. It would be open to the High Court to constitute Medical Board in terms of its order to examine the patient and submit report about the feasibility of acting upon the instructions contained in the Advance Directive.
(iii) Needless to say that the High Court shall render its decision at the earliest as such matters cannot brook any delay and it shall ascribe reasons specifically keeping in mind the principles of "best interests of the patient”.
(f) Revocation or inapplicability of Advance Directive
(i) An individual may withdraw or alter the Advance Directive at any time when he/she has the capacity to do so and by following the same procedure as provided for recording of Advance Directive. Withdrawal or revocation of an Advance Directive must be in writing.
(ii) 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.
(iii) If the Advance Directive is not ambiguous, the concerned Medical Boards shall not give effect to the same and, in that event, the guidelines meant for patients without Advance Directive shall be made applicable.
(iv) Where the Hospital Medical Board takes a decision not to follow an Advance Directive while treating a person, then it shall make an application to the Medical Board constituted by the Collector for consideration and appropriate direction on the Advance Directive.
12. The Honorable Supreme Court also made it clear that there will be cases where there is no Advance Directive. The said class of persons cannot be alienated. In cases where there is no Advance Directive, the procedure and safeguards are to be same as applied to cases where Advance Directives are in existence and in addition there to, the following procedure shall be followed: -
(i) In cases where 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, the physician may inform the hospital which, in turn, shall constitute a Hospital Medical Board in the manner indicated earlier. The Hospital Medical Board shall discuss with the family physician and the family members and record the minutes of the discussion in writing. During the discussion, the family members shall be apprised of the pros and cons of withdrawal or refusal of further 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. Their decision will be regarded as a preliminary opinion.
(ii) In the event the Hospital Medical Board certifies the option of withdrawal or refusal of further medical treatment, the hospital shall immediately inform the jurisdictional Collector. The jurisdictional Collector shall then constitute a Medical Board comprising the Chief District Medical Officer as the Chairman and three experts from the fields of general medicine, cardiology, neurology, nephrology, psychiatry or oncology with experience in critical care and with overall standing in the medical profession of at least twenty years. The Medical Board constituted by the Collector shall visit the hospital for physical examination of the patient and, after studying the medical papers, may concur with the opinion of the Hospital Medical Board. In that event, intimation shall be given by the Chairman of the Collector nominated Medical Board to the JMFC and the family members of the patient.
(iii) 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 of the Collector nominated Medical Board to withdraw or refuse further medical treatment to the terminally ill patient.
(iv) There may be cases where the Board may not take a decision to the effect of withdrawing medical treatment of the patient on the Collector nominated Medical Board may not concur with the opinion of the hospital Medical Board. In such a situation, the nominee of the patient or the family member or the treating doctor or the hospital staff can seek permission from the High Court to withdraw life support by way of writ petition under Article 226 of the Constitution in which case the Chief Justice of the said High Court shall constitute a Division Bench which shall decide to grant approval or not. The High Court may constitute an independent Committee to depute three doctors from the fields of general medicine, cardiology, neurology, nephrology, psychiatry or oncology with experience in critical care and with overall standing in the medical profession of at least twenty years after consulting the competent medical practitioners. It shall also afford an opportunity to the State counsel. The High Court in such cases shall render its decision at the earliest since such matters cannot brook any delay. Needless to say, the High Court shall ascribe reasons specifically keeping in mind the principle of "best interests of the patient".
13. The Supreme Court has thus framed the basic requirements and safeguards concerning the preparation and execution of an Advance Directive. However, there is still no legislation for the same. Therefore, the principles relating to the procedure for execution of Living Will or Advance Medical Directive shall be governed by the judgment in the Common Cause Case and shall remain in force till the Parliament brings a new legislation.
14. The Mental Healthcare Act, 2017 (‘Act’) which came into force on 29th May 2018 , deals with the concept of Advance Directive but is limited to the care and treatment which a person wishes to receive when they are mentally ill. The said Act gives the right to any person, who is not a minor, to make an advance directive whereby he can detail the ways and methods in which they can be treated when they are mentally ill and also nominate persons who could be the one to carry out their wishes when they are mentally ill. Though this Act does not deal with any life-sustaining treatment, it nevertheless brings in the concept of Advance Directive and setting up of executive machinery who can give effect to the concept of Advance Directive concerning mental healthcare.
15. Although the Supreme Court has recognized an Advance Medical Directive (AMD), the substitute of Living Will in India, and refusing to avail certain life-sustaining treatment has become a person’s right, the directive still involves an extremely lengthy and somewhat complicated procedure. Thus, for the Advance Directive to become a reality and be followed and practiced, the concept and procedure concerning the Advance Medical Directive will need to be widely spread and become more easily accessible to the public.
It could further be noted that we had approached a District Judge in Tamil Nadu in October 2020, to enquire about the execution of an Advance Directive. As per discussions with the Learned District Judge, the following points had come up.
a) Though the Supreme Court has provided an elaborate guideline for the execution of an Advance Directive and through a verdict drawn in a Supreme Court Case, High Courts across India should come to a common understanding on how to take this Advance Directive forward. The Jurisdictional Judicial Magistrates who function under the aegis of the High Court will sign any Advance Directive only once the respective High Court specifically permits them to do it. As of now, they follow an implied notice of High Court barring Judicial Magistrates from signing any extra venous orders independently.
b) Further, it may not be easy and straightforward for any normal public to approach Jurisdictional Judicial Magistrate directly, and for any Judicial Magistrate to sign an Advance Directive of any unknown person from the general public. Therefore, a recommendation may be put up before the High Court committee and the necessary procedure can be formulated and adopted whereby a person can approach and have an Advance Directive executed at such places and before such magistrates after having all necessary verification, checks, etc. We at 5ive Legal will strive to work with all stakeholders including but not limited to Healthcare professionals, patients, activists, and intellectuals across varied fields to seek guidance at local High Court level to look for a solution to ease the process of providing and facilitating Advance Directive. We have also given our recommendations of having a separate legal and central body, an uniform process with timelines, as a one stop remedy for common people across India seeking Advanced Directive to actual execution.
c) Further a process of the Hospitals Medical Board to determine the veracity of the Advance Directive can also be made uniform across all states in India. The timelines to act by such authorities are also to be mandated and such procedures have to be identified before making it a common practice.
We at 5ive Legal understand that India is at a nascent stage of adopting Advance Directive and it shall require time and efforts from many professionals to make this practice robust and percolate into the Health Care system in India.