LEGAL UPDATE ON END-OF-LIFE CARE

The Supreme Court in its Judgement dated March 9th,2018 in the matter of Common Cause (A Regd. Society)  vs. Union of India and anr., discussed the concept of Advance Directives. “Advance Directives for health care go  by various names in different countries though the objective, by and large, is the same, that is, to specify an  individual’s health care decisions and to identify persons who will take those decisions for the said individual in  the event he is unable to communicate his wishes to the doctor.” 

In an application filed by the Indian Society of Critical Care Medicine seeking clarification of the judgment  reported in Common Cause (A Registered Society) v. Union of India and anr, a Constitution bench of the  Supreme Court, passed an Order dated January 24th,2023 simplifying the process earlier suggested in the matter  of end of life care. 

The Apex Court laid down principles for the execution of Advance directives and guidelines in both  circumstances — where there are Advance Directives and where there are none. 

Valid Elements for Advanced Directive: 

1)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. 

2)It must be voluntarily executed and without any coercion or inducement or compulsion and after   having full knowledge or information. 

3)It should have characteristics of an informed consent given without any undue influence or   constraint. 

4)It shall be in writing clearly stating as to when medical treatment may be withdrawn or no specific   medical treatment shall be given which will only have the effect of delaying the process of death that   may otherwise cause him/her pain,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. 

5)It should clearly indicate the decision relating to the circumstances in which withholding or   withdrawal of medical treatment can be resorted to. 

6)It should be in specific terms and the instructions must be absolutely clear and unambiguous. 7)It should mention that the executor may revoke the instructions/authority at any time. 8)It should disclose that the executor has understood the consequences of executing such a document. 9)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. 

10)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. 

11)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. 

12)It will be open to the executor to revoke the document at any stage before it is acted upon and   implemented. 

PROCEDURE FOR EXECUTING AN ADVANCE DIRECTIVE 

1)The document should be signed by the executor in the presence of two attesting witnesses, preferably   independent, and attested before a notary or Gazetted Officer. 

2)The witnesses and the notary or Gazetted Officer shall record their satisfaction that the document has been   executed voluntarily and without any coercion or inducement or compulsion and with the full understanding   of all the relevant information and consequence. 

3)The executor shall inform, and hand over a copy of the Advance Directive to the guardian or close relative, as   well as to the family physician, if any 

4)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.  

5)The executor may also choose to incorporate their Advance Directive as a part of the digital health records, if   any.

WHERE THERE IS ADVANCE DIRECTIVE:

1)A living will now be signed by the executor in the presence of two attesting witnesses, preferably   independent, and attested before a notary or gazetted officer. 

2)It should specify the name of a guardian(s) or close relative(s) who, in the event of the executor   becoming incapable of taking decisions at the relevant time, will be authorised to give consent to refuse   or withdraw medical treatment in a manner consistent with the advance directive. 3)The witnesses and the notary or the gazetted officer shall record their satisfaction that the document has   been executed voluntarily and without any coercion or inducement or compulsion and with the full   understanding of all the relevant information and consequences 

4)The executor shall inform and hand over a copy of the advance directive if any to the family physician   and may also choose to incorporate the advance directive as a part of the digital health records. 5)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.  6)In the event of the executor becoming terminally ill and undergoing prolonged medical treatment with no   hope of recovery, and does not have decision-making capacity the treating physician, when made aware   of the advance directive, shall ascertain the genuineness and authenticity of the document with reference   to the existing digital health record of the patient, if any or from the custodian of the document. 7)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 person or persons named in the Advance   Directive, 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. 

8)The hospital where the executor has been admitted for medical treatment shall then constitute a primary   medical board consisting of the treating physician and at least two subject experts of the concerned   specialty with at least five years’ experience, who, in turn, shall visit the patient in the presence of his   guardian/close relative. 

9)They shall form an opinion, preferably within 48 hours of the case being referred to it, whether to certify   or not to certify carrying out the instruction withdrawal or refusal of further medical treatment. This   decision shall be regarded as a preliminary opinion. 

10)In the event the Primary Medical Board certifies that the instructions contained in the advance   directive ought to be carried out, the hospital shall immediately constitute a Secondary Medical Board. 11)Where the Primary Medical Board takes a decision not to follow an Advance Directive while treating a   person, the person or persons named in the Advance Directive may request the hospital to refer the case   to the Secondary Medical Board for consideration and appropriate direction on the Advance Directive 12)The Secondary Board would comprise a registered medical practitioner nominated by the Chief Medical   Officer of the District and at least two subject experts with at least five years’ experience of the specialty   concerned, who were not part of the Primary Medical Board. 

13)They shall visit the hospital where the patient is admitted and if they concur with the initial decision of   the primary medical board of the hospital, they may endorse the certificate to carry out the instructions   given in the advance directive. The Secondary Medical Board shall provide its opinion, preferably   within 48 hours of the case being referred to it. 

14)The Secondary Board must beforehand ascertain the wishes of the executor if he is in a position to   communicate and is capable of understanding the consequences of the withdrawal of medical treatment.   In the event the executor is incapable of taking a decision or develops impaired decision-making   capacity, then the consent of the person or persons nominated by the executor in the Advance Directive   should be obtained regarding the refusal or withdrawal of medical treatment to the executor to the   extent of and  

 consistent with the clear instructions given in the Advance Directive 

15)The hospital where the patient is admitted, shall convey the decision of the Primary and Secondary   Medical Boards and the consent of the person or persons named in the Advance Directive to the   jurisdictional JMFC before giving effect to the decision to withdraw the medical treatment administered   to the executor. 

16)It will be open to the executor to revoke the document at any stage before it is acted upon and   implemented.  

17)If permission to withdraw medical treatment is refused by the Secondary Medical Board, it would be   open to the person or persons named in the Advance Directive 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. 

18)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. 

19)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. 

20)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. 

21)If the Advance Directive is not clear and ambiguous, the Medical Boards concerned shall not give effect   to the same and, in that event, the guidelines meant for patients without Advance Directive shall be   made applicable

WHERE THERE IS NO ADVANCE DIRECTIVE:

The Hon’ble Supreme Court in such circumstances held that it is necessary to make 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: 

1)Guardian will Co-operate with the treating physician about the patient’s health and after being apprised   of the pros and cons of withdrawal or refusal of further medical treatment to the patient accord such   consent in writing. In case the Primary Medical Board does not take a decision to the effect of   withdrawing medical treatment of the patient or the Secondary Medical Board does not concur with the   opinion of the PMB, the nominee of the patient/family member/ treating doctor/ hospital staff can seek   permission from the High Court to withdraw life support by way of writ petition 

2)In cases where the patient is terminally ill and undergoing prolonged treatment in respect of an ailment   that is incurable, the physician may inform the hospital to constitute a Primary Medical Board. In case the   Primary Medical Board does not take a decision to the effect of withdrawing medical treatment of the   patient or the Secondary Medical Board does not concur with the opinion of the Primary Medical Board,   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. 

3)On being informed by the doctor about a patient being terminally ill and undergoing prolonged medical   treatment, which is incurable the hospital shall constitute a Primary Medical Board (Consisting of the   treating physician and at least two subject experts of the concerned speciality with at least five years of   experience) 

4)The Primary Medical Board shall discuss with the family physician, if any, and the patient’s next of   kin/next friend/guardian and record the minutes of the discussion in writing. During the discussion, they   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 Primary Medical Board may certify the course of action to be   taken preferably within 48 hours of the case being referred to it. Their decision will be regarded as a   preliminary opinion. 

5)In the event the Primary Medical Board certifies the option of withdrawal or refusal of further medical treatment, the hospital shall then constitute a Secondary Medical Board (Consisting of one registered medical practitioner nominated by the Chief Medical Officer of the District and at least two subject experts with at least five years’ experience of the concerned specialty who were not part of the   Primary Medical Board)   

6)The Secondary Medical Board shall visit the hospital for a physical examination of the patient and, after studying the medical papers, may concur with the opinion of the Primary Medical Board. In that event, intimation shall be given by the hospital to the JMFC and the next of kin/next friend/guardian of the patient preferably within 48 hours of the case being referred to it.   

7)In case the Primary Medical Board does not take a decision to the effect of withdrawing medical treatment of the patient or the Secondary Medical Board does not concur with the opinion of the Primary 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. 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.

8)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.   

9)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.