How to make a 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 may also contain the directions related to organ donation as it may happe that 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.


Procedure to be followed for making an AD

Vide an order passed in Misc Application No 1699/2019 filed by Indian Society of Critical Care Medicine before the Supreme Court seeking clarification of the judgment reported in Common Cause (A Registered Society) v. Union of India and Another (2018) 5 SCC, the obstacles faced in executing the AD were adrressed by the Supreme Court and directions to execute a Living Will / Advance Directive, were given by the Supreme Court which can be summarized under the following headings:

  • Who can execute the Advance Directive and how
  • What should it contain
  • How should it be recorded and preserved
  • When and by whom can it be given effect to
  • What if permission to withdraw medical treatment is refused by the Secondary Medical Board?
  • Revocation or inapplicability of Advance Directive
  • Procedure to be followed where there is no Advance Directive

A. Who can execute the Advance Directive and how?

  • 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.
  • It must be voluntarily executed having full knowledge or information and not under any coercion, inducement or compulsion.
  • It should have the characteristics of an informed consent without any undue influence or constraint.
  • 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(the Executor) pain, anguish and suffering and further put the patient (Executor) in a state of indignity.

B. What should it contain?

  • i. Details of the Executor –
    • Full name of the Executor
    • Date of Birth
    • Permanent Address
    • Present Address
    • ID Proof
    • Proof of Residence
    • Contact details : Mobile Number and Email address
  • It should clearly mention the circumstances in which withholding or withdrawal of medical treatment can be resorted to.
  • It should be in specific terms and the terms of the documents must be absolutely clear and unambiguous.
  • It should mention that the executor may revoke the instructions / authority at any time
  • It should disclose that the executor has understood the consequences of executing such a document.
  • 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.

Palliative Care is part of the National Health Mission (NHM) program under the Ministry of Health & Family Welfare, Government of India. The Indian Association of Palliative Care (IAPC) is a registered Public Trust and Society formed in consultation with the World Health Organisation (WHO) and the Government of India as a national forum on palliative care.

The IAPC has issued the following guidance on medical procedures that may be included in the Living Will such as –

Withholding or withdrawal of the following medical procedures or forms of treatment:

  • Cardio-pulmonary resuscitation
  • Intravenous fluids and medications including antibiotics; excluding those that would provide comfort or relieve suffering/pain
  • Dialysis
  • Ventilation or other kinds of artificial life support
  • Chemotherapy
  • Radiotherapy
  • Surgery, unless it is for symptom control or to improve the quality of my life
  • Artificial administration of nutrition and hydration through means such as intubation, if it serves to only artificially prolong the process of dying (unless it is provided as part of symptom control or for improving the quality of my life).

Following medical procedures or forms of treatment to be provided or continued:

1. Cardio-pulmonary resuscitation

1. Intravenous fluids and medications including antibiotics; excluding those that would provide comfort or relieve suffering/pain]

Further, even when life-sustaining treatment is withheld/withdrawn, I direct the administration of medication or the performance of medical procedures for providing me with comfort care/ palliative care, or to alleviate suffering in the form of pain, distress, or mental confusion [or to facilitate organ or body donation].


C. How should it be recorded and preserved?

  • The document should be signed by the executor in the of presence of two independent attesting witnesses and attested before a notary or Gazetted Officer.
  • The witnesses and the notary or Gazetted Officerr 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.
  • The executor shall inform, and hand over a copy the of Advance Directive to the person or persons named in para b(vi) hereinabove, as well as to the family physician, if any.
  • A copy shall be handed over to the competent officer of the local Government or the Municipal Corporation or Municipality Panchayat, as may be. The aforesaid authorities shall nominate a competent official in that regard who shall be the custodian of the said document.
  • The executor may choose also to incorporate their Advance Directive as a part of the digital health records, if any.

D. When and by whom can it be given effect to?

  • t 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 and does not have decision making capacity
  • In that event, the treating physician should first ascertain the genuineness and authenticity of the Ad with reference to the existing digital health records of the patient, if any or from custodian of the douments referred to hereinabove
  • 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 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.
  • If the physician treating the patient (executor) is satisfied that the instructions given in the document need to be acted upon, he shall inform the person pr persons named in the AD, about the nature of illness, the availability of medical care and the consequences of alternative forms of treatment and the consequnces 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.
  • 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 guardian/close relative to from an opinion preferably within 48 hours of the case being referred to it whether to certify or not to certify carrying instructions of withdrawal or refusal of further medical treatment. This decision shall be regarded as preliminary opinion.
  • In the event the Primary Medical Board certifies that the instructions contained in the Advance Directive ought to be carried out, the hospital shall then immediately constitute a Secondary Medical Board comprising 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 concerned specialty who were not part of the Primary Medical Board. They shall visit 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.
  • 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 withdrawal of medical treatment. In the event the executor is incapable of taking decision or developes impaired decision-making capacity, then the consent of the person or persons 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.
  • 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.
  • 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 to withdraw medical treatment is refused by the Secondary Medical Board?

  • If permission to withdraw medical treatment is refused by the Medical Board, it is open to the person 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 fields of general medecine, 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 High court shall hear the application expedietiously after affording opportunity to the state counsel. It would be open to the High Court to constitute a Medical Board in terms of its order to examine the patient and submit report about feasibility of acting upon the instructins contained in the AD
  • The High Court shall 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".

F. Revocation or inapplicability of Advance Directive:

  • 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.
  • Withdrawal/revocation of an Advance Directive must be in writing.
  • 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.
  • 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 the Primary Medical Board takes a decision not to follow an AD while treating a person, the person named in the Ad may request the hospital to refer the case to the Secondary Medical Boardfor consideration and appropriate direction

G. Where there is no Advance Directive:

  • 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 shall Primary Board in the manner indicated earlier. The Primary Medical Board shall discuss with the s 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, the patient's next of kin/next friend/guardian 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 preferably to be taken within 48 hours of the case being referred to it. Their decsion will be regarded as a preliminary opinion.
  • In the event the Primary Medical Board certifies the option of withdrawal or refusal medical of further treatment, hospital shall constitute a Secondary Medical Board comprising in the manner indicated herein before. The Secondary Medical Board shall visit the hospital for 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 friend/guardian kin/next of the patient preferably within 48 hours of the being referred to it.
  • There may be cases where the Primary Medical Board may not take a decison to the effect of withdrawing the medical treatment of the patient or the Secondary Medical Board may not concur with the of opinion 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 under Article 226 of the Constitution in which case the Chief Justice of the said High Court shall constitute a Division Bench shall decide which 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 my 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 mind the principle in of "best interests of the patient".
  • Having said this, we think it appropriate to cover a vital aspect to the effect the life support is withdrawn, the same shall also be intimidated by the Magistrate to the High Court. It shall be kept in a digital format by the Registry of the High Court apart from keeping the hard copy which shall be destroyed after the expiry of three years from the death of the Patient.