Demystifying the Living Will for the common man.

By | 11/03/2023
0 Comment







Sometime back, after reading the coverage of a professor registering his LIVING WILL, I realised how little people know about such an important document.  People know of WILL, a legal document that details and records individual wishes on how the wealth would be distributed among stakeholders after the death. Without such a document,  the dependants and other stakeholders must fight legal battles, spending time, money, and emotional energy to rightly access and settle the property. LIVING WILL IS DIFFERENT. Its content applies when the person is alive. It is a written document specifying what actions should be taken in future if a person cannot make their own medical decisions.

UPDATE 27th September 2024: Govt has unveiled draft guidelines to take terminally ill off life-sustaining support and invited public comments by 20th October 2024 . As per the draft, ‘If the person has made a valid Advanced medical directive (living will or AMD), the surrogate will be listed in the AMD  to decide to withdraw the life support.  Read all about #Livingwill – Patient/surrogate documented informed refusal, following prognostic awareness, to continue life support.

Living Will has become important and critical in India after the Supreme Court legalised Passive Euthanasia in 2018. Before the Supreme Court judgement, we followed the process of signing a ‘LEAVING WITHOUT MEDICAL ADVICE’ (LAMA) document, which merely transferred the full responsibility for discontinuing life support therapies from the doctor to the patient. This did not allow enough freedom of choice and was very narrow in scope and operation.

Support Euthanasia.

I strongly support Euthanasia and the dignity of life and death in the last days of life. I believe people with incurable, degenerative, disabling, or debilitating conditions must be allowed to die in dignity. It is natural that the caregiver is under considerable financial, emotional, time, physical, mental, and social expectations. The massive cost of palliative care and treatment burdens the close group caring for the patient. These funds and energies could be better utilised for the dependent’s future. If one checks with patients in a persistent vegetative state or else in chronic illness, they would realise that most do not want to burden their family members with the financial and emotional load.

I have written my living will and will soon get it registered. Beyond the financial strain and better funds utilisation opportunities, I fear being utterly dependent on every minor thing and medical support system.

PIC CREATED WITH DALLE-E

The Flaw In The Legal System.

In the Indian legal system, one can refuse a life support system; it is far easier to do so. However, once the life support system is in place, the law does not allow taking it off without a long, torturous legal battle—which drains financial and emotional energies.

Indian Legal System – Limited Right To Die.

Indian courts have now given the individual the choice. These choices, if properly written, documented, or at least notarised, if not registered, can override the choices and decisions of the government, medical professionals, religious bodies, relatives, and friends.

The legal system recognises Passive Euthanasia. For it to be applicable, two irreversible conditions must be met. (I) The person is brain-dead so that the ventilator can be switched off. (II) Those in a Persistent Vegetative State (PVS) for whom the feed can be tapered out and pain-managing palliatives be added.

Note that Indian courts do not support Active euthanasia, including administration of lethal compounds for the purpose of ending life. It is illegal in India.

In the absence of a Living Will, the situation gets complicated. Then, either the parents, spouse, or other close relatives, or in the absence of any of them, a person or a body of persons acting as a next friend must make the decisions. Doctors can also make the decisions. Such decisions then must pass the test of being made in the patient’s best interest, which always is towards life support.

If the near relatives, doctors or next friend make a decision to withdraw life support. In that case, the decision requires the presence of two witnesses countersigned by a first-class judicial magistrate and must be approved by a medical board set up by the hospital. It is an arduous, long-drawn process that a living Will can help prevent.

Passive Euthanasia – The First Right Step.

Legalised or not, Passive euthanasia still happens in many hospitals. Poor patients and their family members and, at times, well-to-do families refuse or withdraw life support systems or treatment due to high costs or the physical and mental burden of keeping the patient alive.

One fears that if Euthanasia is legalised in India, the health sector will quickly and with no guilt serve death sentences to many disabled and elderly citizens of India for minor monetary considerations. Hence, currently, the Indian legal system only entertains and legalises passive euthanasia.

Voluntary Euthanasia.

India does not allow VOLUNTARY EUTHANASIA, including refusal of food and fluids (VRFF), also called voluntarily stopping eating and drinking, or VSED or Patient Refusal of Nutrition and Hydration (PRNH), is not allowed. It is different from ASSISTED SUICIDE, where an individual who may otherwise be incapable is provided with the means (drugs or equipment) to commit suicide. This Assisted suicide is illegal in India.

Why Make A Living Will?

Living Will helps one to be in control of how one is treated in the last days of life in case one is terminally ill or in a vegetative state.

It guides doctors and health care personnel, provides clarity and closure to loved ones, prevents conflict or disagreements among family members, and limits the emotional burden on the closest people at the time of death.

Living Will Is Not Only For The Aged.

You are absolutely wrong if you think that a Living will is for older people. Unexpected end-of-life situations can happen at any age. Hence, if a person is interested in explicitly defining directions and choices when in a state where the person is unable to make the decisions, then irrespective of age, one should prepare a Living will, at least notarise it, and communicate about it to his near and dear ones.

Making A Living Will Operative.

Living Wills have a limited scope in the Indian legal system. It is only operative when one is in a coma or vegetative state or has been diagnosed with a terminal illness. It is non-operative in every other situation, but then some control is better than no control.

A Living Will is useless if it is untraceable or if no one knows about it. Remember, once one is in a vegetative state or unable to make decisions, the person is also incapable of telling others where to find the Living Will when required.

Once you make a living, tell your relatives and close ones about it. This will help avoid unnecessary suffering and relieve caregivers of decision-making burdens during moments of crisis or grief. It will also reduce confusion or disagreement about the choices one wants people to make on their behalf. Hence, if you do make a living will, please tell your family members and friends about it and, if possible, ensure they have a copy.

If you receive palliative care or treatment for a life-threatening disease, share the Living Will with the doctors and institution. This will ensure they are aware of it and willing to make the decisions you have directed in the Living Will.

Remember that a medical professional is not bound to completely follow the Living Will, but it will always help the caregiver, family, and friends to ensure it is followed.  

The Legality of Living Will.

The first requirement of a living will is that it is written and states the individual’s preferences. It is a legal document meant to be clear and concise to avoid confusion about what the patient wants. The document must be signed and dated by the person making it, and two witnesses must sign it. Most importantly, it should clarify that the instructions specified in the living will override any other instructions mentioned in any earlier documents.

A living will need not be registered or notified. However, if it is not registered, it can be disputed in its interpretation or authenticity. Hence, if you are serious about a living will, it is Better To Get It Registered And Notarised.

What a Living Will Includes?

A Living Will gives instructions about what the person would want to be done if they were unable to make decisions. It specifies the people who can make decisions on behalf of the patient if they cannot speak for themselves. Living Will covers the type of medical treatment the person would like. It tells who to contact and consult about the person’s care.

A Living Will dictates whether an individual wants to be on life support. It also includes the acceptable artificial feeding and hydration type and whether they want any extraordinary or experimental treatments.

A Living Will may cover details of whether the person wants to be on life support. And do so even if there is no hope for recovery. Doctors and hospitals should be contacted for emergencies and may cover the funeral wishes.

It may sound contrary that Living Will names a person or set of people to make the final calls. Living Will is the choice made by the person. One cannot possibly anticipate and cover everything in a living will. Hence, it is best to nominate and designate a person(s) to take calls on your behalf. You can trust them to make decisions that adhere to your guidelines, wishes and values. People who you can trust to be your advocate if there are disagreements about the process, care and decisions.

Think before making a Living Will.

A living will is a legal document. It becomes operative when you cannot guide or help interpret your wishes. Hence, you must give it enough thought before writing it down.

Think about your values. Evaluate and consider how important it is to be independent and self-sufficient. Think and be clear about the circumstances that might make you feel like your life is not worth living. Answer if you would want treatment to extend your life in any situation. All situations? Would you want treatment only if a cure is possible?

Some of the conditions you can easily cover and should cover in your living will include the use of Cardiopulmonary resuscitation (CPR), Mechanical ventilation and Tube feeding. The use of Dialysis, administering Antibiotics or antiviral medications when you are near the end of life or terminally ill or are under Comfort care (palliative care), And how to manage the pain. Your choice of Organ and tissue donations. It can and, in my view, should cover the possibility of donating your body for scientific study.

NET-NET.

A living will is an important document that every adult should write, communicate with friends and relatives, and at least notarise if they can not register it. It will greatly help close relatives, friends, and caretakers when a situation arises to follow your wishes and directions. You can use the help of legal offices to make a living will and notarise or register it. However, even a simple written Living Will works if no stakeholder disputes it- however, it will depend upon the hospital and medical professional to honour it; a registered Living Will ensures that the directions are respected and implemented.

BLOG/016/2023 Updated 20240712
To connect, send an email, join on Twitter S_kotnala or subscribe to the weekly update.

TEMPLATE LIVNG WILL.
Also called ADVANCe MEDICAL DIRECTIVE.

The original draft is readily available for free download.at https://getyellow.in/living-will-advance-directives. This document has been updated and revised toAdd/exclude certain condition to enhance its effectiveness and scope.

IMPORTANT:

If you decide to use this template or create your own Advanced Medical Directive/living will, you are advised and requested to consult with your physician and attorney to ensure that your wishes are clearly expressed and comply with the law.

If you disagree with any of its statements, you may cross them out. You may add comments to this form or use your form to help your physician or health care agent decide your medical care.

This template/format and text do not represent the final authoritative format or one that will always comply with the law of the land. You are requested to check for validity with your attorney or make the changes as deemed fit.

………………………………………………………………………………………….

ADVANCE MEDICAL DIRECTIVE- LIVING WILL

I, _______________________(name), son/daughter/wife of _______________________ (name), aged ____ years, residing at _________________________ ________________ ____ _____ ___ _____ __ __(address), a citizen of India, hereby exercise my right to make decisions about my healthcare with a sound mind and free of any coercion. This document titled Advanced Medical Directive (or “AMD” – alternatively known as Living Will or Medical HealthCare Instruction) shall come into force when I am unable to make my own healthcare decisions due to my physical or mental incapacity. In the event of losing my capacity of decision-making, or I have an end-stage medical condition (which will result in my death, despite the introduction or continuation of medical treatment) or am permanently unconscious, such as in an irreversible coma or irreversible vegetative state and there is no realistic hope of significant recovery, those caring for me, such as my guardian(s) listed below, will need directions regarding my healthcare. By this document, I express my wishes regarding my healthcare choices and direct my guardians or caregivers; both healthcare workers as well as relatives and friends assigned herewith, to make decisions in accordance to my expressed wishes hereunder.

  1. I direct that this document become a part of my permanent medical record. I express that the instructions and wishes stated hereunder shall remain in full force and effect anywhere in the world.
  • I hereby designate my __________ (relation), _____________, (name) aged ____ years, residing at ___________________________________________________ (address),              ………………. (Mobile) …………………………….. (e-mail) Identified with Aadhar card number ………………………………………..  as my prime and First Guardian or First Healthcare Representative (FHCR) to make any and all healthcare decisions on my behalf. This shall include decisions to accept or refuse treatment, service,  or/and procedure used for diagnosis or treatment for any physical or mental condition, provide, withhold, or withdraw life-sustaining measures. In case my wishes expressed pose any challenge in interpretation, my First Healthcare Representative is fully authorised to make and take decisions on my behalf.
  • If  the above person designated as my First Healthcare representative is unable, unavailable or unwilling, In that case, I designate the following persons to act as my alternate healthcare representatives in the following order of priority: I.e. they follow a hierarchy and in order and not a collective decision making. Simply if the FCR is not in a position to make the decisions then SCR ( Second Healthcare Representative- SHCR) and, in the absence of  FHCR and SHCR- the Third Healthcare Representative, to act as my alternate Healthcare Representative.
  1. ___________________, (name) aged ____ years, residing at ___________________ _____________________________________________________ (address) ………………. (Mobile) …………………………….. (e-mail) Identified with Aadhar card number ……………………………………….. 
  2. ___________________, (name) aged ____ years, residing at ___________________ _____________________________________________________ (address) ………………. (Mobile)  …………………………….. (e-mail) Identified with Aadhar card number ……………………………………….. 
  3. In the rare case of all three, FHCR, SHCR, and THCR are unavailable. Then the normal process of decision-making first by my ……………….(relation)…………………… (name) ………………. (Mobile)  …………………………….. (e-mail) Identified with Aadhar card number ………………………………………..    followed by my ……………….(relation) …………………… (name) ………………. (Mobile) …………………………….. (e-mail) Identified with Aadhar card number ………………………………………..   and followed by my ……………….(relation) …………………… (name)  ………………. (Mobile)  …………………………….. (e-mail) Identified with Aadhar card number ………………………………………..   will be authorised to make decisions to accept or refuse treatment, service, procedure used for diagnosis or treatment for any physical or mental condition, provide, withhold, withdraw life-sustaining measures.
  • Effective immediately and continuously until my death or revocation by a written fresh/new AMD signed by me or someone authorised to make/take health care treatment decisions for me, I authorise all health care providers or other covered entities to disclose to my health care representative, upon request, any information, oral or written, regarding my physical or mental health, including, but not limited to, medical and hospital records and what is otherwise private, privileged, protected or personal health information, such as health information as defined in the laws.
  • I direct that treatments that will artificially prolong my dying be withheld or discontinued in any of the following circumstances:
  1. If I am diagnosed as having an incurable, irreversible illness, disease(s) or condition(s) and where my physician determines that my condition is “terminal” in nature or
    1. If I become unconscious and there is a high likelihood that I may not recover back my consciousness or
    1. If I am diagnosed with a disease that causes severe impairment of physical and mental functions.
  • I direct that I be given treatment and care to make me comfortable and relieve my pain. I direct the physician to give the necessary dose so as to provide maximum pain relief. I am aware that some of these medicines may lead to side effects. I direct my physician to be undeterred by such side effects and provide pain relief of the highest quality. I direct my healthcare representative to consent for the same if need be.
  • When suffering from the above conditions, in the event of cardiac or respiratory arrest, I direct the doctors/physicians/healthcare professionals not to initiate any resuscitation in any form on me.
  • I direct not to initiate or provide nutrition (food) or hydration (water) medically supplied by tube(s) through my nose, stomach, intestines, arteries or veins.
  • I direct not to be provided with artificial, supportive or mechanical ventilation.
  • I direct them not to put me on dialysis.
  1. I direct them not to initiate or proceed with any form of cardiopulmonary resuscitation (CPR) through an electric show or any mechanical process.
  1. I direct them not to do blood transfusion other than in case of an operation where I have, or my Healthcare representative has provided the consent.
  1. I direct to provide supportive and palliative care and maintain my dignity till I die.
  1. I direct my healthcare giver and Healthcare Representative to interpret the above conditions with liberal meaning and not in a restrictive manner. However, for the conditions expressively mentioned here in AMD / Living will, I bind my Healthcare representative to follow them in principle.
  1. In case the health care provider/hospital/institution is unable to or refuses to honour my AMD or living will, I give my Health Care Representative to withdraw my treatment at such a place and move me to another health care provider/hospital/institution that is willing to provide / honour / follow my AMD. 
  1. My health care representative has all of the following powers subject to the health care treatment instructions that have been earlier stated in this document.
  1. To authorise, withhold or withdraw medical care and surgical procedures.
    1. To authorize my admission to or discharge from a medical, nursing, residential or similar facility and to make agreements for my care and health insurance for my care, including hospice and/or palliative care.
    1. To hire, fire and engage medical, social service and other support personnel responsible for my care.
    1. To take any legal action necessary to do what I have directed.
  1. I wish to donate my organs after my death. I have already completed the formality regarding organ donation, and I request to carry out the organ donation procedure after my death. (optional – to be removed in case you do not wish to donate organs)
    or
    I wish to donate my organs after my death. I have not completed the formality regarding organ donation, but I request to carry out the organ donation procedure after my death.  I give my healthcare representative the right to provide consent for the same. (optional – to be removed in case you do not wish to donate organs)
  1. I authorise my healthcare representative to keep the original copy of this document and produce it whenever needed.
  1. I reserve my right to revoke this document by making/writing a new document. The most recently signed document shall be considered as my final AMD in this regard.
  1. I absolve the healthcare professionals/doctors of any medico-legal liability which may arise during my treatment at that time. I direct my designated healthcare representative – family or friends not to initiate any action against any individual or organisation for abiding by this document.

I state that the above document has been made voluntarily by my free will and with a sound mind and that I have understood the consequences of executing this document. I state that the same has not been made by me under coercion, inducement, misrepresentation or fraud. At the time of making this document, I am fully healthy and sane in mind and not under the influence of alcohol, drugs or any such substance.

IN WITNESS OF WHICH I sign my AMD on _______________, 2023.

EXECUTOR 
Name: 
Address: 
Date: 
WITNESS 1: 
Name: 
Address: 
Date: 
WITNESS 2: 
Name: 
Address: 
Date: 

We, witnesses to the said AMD, hereby record our satisfaction that the above AMD has been executed voluntarily and without any coercion or inducement or compulsion and with full understanding of all the relevant information and consequences.

NOTARY/GAZETTED OFFICER 
Name: 
Address: 
Date: 

I, Notary/Gazetted Officer, hereby record my satisfaction that the above AMD has been executed voluntarily and without any coercion or inducement or compulsion and with full understanding of all the relevant information and consequences.