Last week, the local newspaper carried the news about a professor who had notarized his LIVING WILL. And when I spoke with friends and relatives, I realised that many do not know of the Living Will. To all will is a legal document that details the person’s wishes on the distribution of the property and the care of any minor children. In the absence of a Living Will, the dependants and other claimants may end up fighting a legal battle or spending additional time, money, and emotional energy to settle the property and assess after the person’s death.
As the name suggests, a living will is different, and its content applies when the person is alive. Simply speaking, a Living Will is a written document specifying what actions should be taken if the person cannot make their own medical decisions in the future.
A living will become more important and critical in India after Supreme Court legalising Passive Euthanasia in India in 2018. Before this supreme court judgement, there was a process of signing a ‘LEAVING WITHOUT MEDICAL ADVICE’ (LAMA), which transferred the full responsibility for discontinuing his life support therapies from the doctor to the patient. And it was very narrow in its scope and operation.
EUTHANASIA AND ME.
Now, I am a vocal supporter of Euthanasia and the dignity of life and death in the last days of life. I firmly believe that people with incurable, degenerative, disabling, or debilitating conditions should be allowed to die in dignity. Additionally, the caregiver has a considerable burden regarding financial, emotional, time, physical, mental, and social avenues. In such cases, the cost of palliative care and treatment burdens the close group caring for the patient. Truly, these funds and energies could be better utilised. And most patients in a persistent vegetative state or else in chronic illness do not want to burden their family members.
I am planning to have my living will. More than the burden and better funds utilisation, the reason is different for me. I only fear being completely dependent upon medical support systems and caretakers for even minor things. And in the Indian legal system, one can refuse a life support system, but once it is in place, the law does not allow taking them off. And the process to do it is a long torturous legal battle.
INDIAN LEGAL SYSTEM – LIMITED RIGHT TO DIE.
Now, Indian courts give the choice in the hands of the individual. These choices, if properly written and documented, override the choices and decisions that the government, medical professionals, religious bodies, relatives, and friends make.
The legal bodies now recognise Passive Euthanasia. For it to be applicable, two irreversible conditions must be met. (I) The person is brain-dead, so 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.
One must note that Indian courts do not support Active euthanasia, including the administration of lethal compounds for the purpose of ending life. It is still illegal in India.
In the absence of a living will, the situation gets complicated. Then either the parents or the 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 take the decisions. Doctors can also take the decision. However, the decision should be taken in the patient’s best interest.
And suppose a decision is taken by near relatives, doctors or next friend to withdraw life support. In that case, the decision requires the presence of two witnesses and countersigned by a first-class judicial magistrate and should also be approved by a medical board set up by the hospital. An arduous, long-drawn process that a living will help avoid.
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 treatment because of the considerable cost or the physical and mental burden involved in keeping the patient alive. It is feared that if Euthanasia is legalised in India, the health sector will easily and with no guilt serve death sentences to many disabled and elderly citizens of India for minor monetary considerations. And hence currently Indian legal system only entertains and legalises passive euthanasia.
PASSIVE VS VOLUNTARY EUTHANASIA.
Passive Euthanasia and Voluntary Euthanasia are two different things. In India, 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.
And also is different from Assisted suicide, in which 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 SHOULD ONE MAKE, A LIVING WILL?
It helps you 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.
Living Will guides the 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- NOT ONLY FOR THE AGED.
It is a myth that Living will is for older people. Unexpected end-of-life situations can happen at any age. Hence, if the person is interested in defining directions and choices in such a state, then irrespective of age, one should prepare a Living will and get it notarised in addition to communicating to his near and dear ones.
MAKING A LIVING WILL OPERATIVE.
Living Wills have a limited scope. As per 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 some control is better than no control.
A living will be of no use if it is untraceable or no one knows about it. Remember, you cannot explain or tell others where to find the Living Will when incapacitated.
Once you make, a living will communicate about it to close relatives and friends. It 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 you want people to make on your behalf. Hence, please tell family members and friends about your living will and, if possible, ensure they have a copy.
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. Additionally, the document should 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 over-rides any other instructions mentioned in any earlier documents.
A living will need not be registered or notified. In the absence of it, there can be a dispute in interpretation and claim of it being genuine or not. Hence, if you are serious about a living will, better to get it registered and notarized.
WHAT WILL A LIVING INCLUDE?
A living will give 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. It covers the type of medical treatment the person would like . And it tells who to contact and consult about the person’s care.
Living Will dictates whether an individual wants to be on life support. It includes the type of artificial feeding and hydration acceptable, and whether they want any extraordinary or experimental treatments.
It may cover if the person wants to be on life support or not. And do so, even in the case 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 name a person or set of people to make the final calls. Living Will is the choices made by the person. One cannot possible anticipate and cover everything in 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 only becomes operative when you cannot guide or help interpret your wishes. Hence you must give enough thought to it before writing it down.
Think about your values. Evaluate and consider how important it is for you 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. They are are the use of Cardiopulmonary resuscitation (CPR), use of Mechanical ventilation and Tube feeding. Cover the use of Dialysis, administering Antibiotics or antiviral medications when you are near the end of life or terminally ill, being put under Comfort care (palliative care), how to manage the pain. Your choice of Organ and tissue donations. You can even cover the possibility of donating your body for scientific study.
In the absence of a living will, you can only provide do not resuscitate (DNR) and do not intubate (DNI) orders to your doctor when you are in complete control of your senses and competent enough to make such a decision. However, in the absence of a living, these could be disputed. You need to establish and provide DNR or DNI orders every time you are admitted to a new hospital or healthcare facility.
NET-NET.
A living will is an important document that every adult should consider making, communicating to friends and relatives and notarising 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, though the living will need not be written on stamp paper or notarized.
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ADDON: In case you are interested in Living Will, chances are you may be interested to know about AATM SHRADH– Doing your own Shradh while alive. An interesting ritual that is less understood.
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