Introduction
In a landmark judgement in March 2018, the Supreme Court of India held that the right to die with dignity was part of the right to life under the Constitution as a fundamental human right.This has been made possible by legalising "Passive Euthanasia", by allowing individuals to prepare an "Advance Medical Directive" or a "Living Will" to refuse medical treatment in the event of being terminally ill or in a persistent vegetative state. However, a year after the judgement, a survey of more than 2400 urban Indians across seven cities - Delhi, Mumbai, Kolkata, Hyderabad, Bangalore, Chandigarh, and Jaipur - revealed that only 27% were aware of the concept of a Living Will.
What is a Living Will
A living will / Advance Medical Directive is a legal document that specifies a person's wishes regarding medical treatment; specifically treatments that will prolong life. This document is prepared in advance, well before it is actually needed and is used when a person is unable to make medical decisions for himself/herself due to his/her medical condition.
The concept of a living will, while upholding the right to die with dignity as a fundamental right, also has the following advantages-
a) It helps medical professionals to take difficult decisions and
b) It frees a patient's family from the guilt of having to take difficult decisions.
At the same time, in order to guard against the danger of misuse, the Supreme Court has laid down detailed guidelines relating to the preparation of the living will, as well as elaborate safeguards for execution of the living will to give effect to passive euthanasia.
Guidelines for the preparation of a Living Will
1. It should be a written document made voluntarily by the person (and not under duress) who should be of a healthy and sound state of mind with the capability to communicate his/her intent clearly.
2.It should contain a declaration that the person making it is aware of the consequences of executing the will.
3. It should mention that the executor may revoke the instructions at any time.
4. It should state clearly -
a) at which point in time treatment should be withdrawn
b) the circumstances of enforcing such a decision
c) the name of the relative who can decide on his/her behalf
5. It should be signed by the person making it in the presence of two witnesses, and countersigned by the jurisdictional Judicial Magistrate of First Class (JMFC) confirming that the will has been drawn up voluntarily.
The JMFC will maintain a copy of the will and forward a copy to the registry of the district court of that jurisdiction.
Another copy has to be handed over to the nominated official of the municipal corporation for safe custody.
Further, the JMFC also has to hand over a copy of the directive to the family physician.
Execution of the Living Will
When a person becomes terminally ill, with no hope of recovery despite treatment, the treating physician, when made aware about the living will, has to ascertain the genuineness and authenticity of the document from the JMFC, after which all the proper legal and operational procedures laid down to give effect to the living will must be followed.
a) A preliminary opinion has to be sought from a duly constituted hospital medical board which has to give their permission for the execution of the living will.
b) The hospital then has to inform the jurisdictional Collector about the clearance from the medical board.
c) The Collector shall constitute another medical board chaired by the Chief District Medical Officer who will convey the decision of the board to the jurisdictional judicial magistrate.
d) The judicial magistrate shall visit the patient at the earliest, and after examining all aspects, authorise the implementation of the Board's decision.
In cases where the medical board refuses to grant permission to execute the living will, the family will have to approach the High Court to decide upon the case.
As is evident from a perusal of the complex legal and operational checks and balances that have been laid down, from a practical point of view, the execution of a living will in India is easier said than done, thereby creating legal uncertainty around end of life decision making. This has emerged as a barrier in ensuring the quality of death and the right to die with dignity. As a result, terminally ill patients often spend their last days in Intensive Care Units in a bid to artificially prolong life at high emotional and financial costs to them and their families.
In a landmark judgement in March 2018, the Supreme Court of India held that the right to die with dignity was part of the right to life under the Constitution as a fundamental human right.This has been made possible by legalising "Passive Euthanasia", by allowing individuals to prepare an "Advance Medical Directive" or a "Living Will" to refuse medical treatment in the event of being terminally ill or in a persistent vegetative state. However, a year after the judgement, a survey of more than 2400 urban Indians across seven cities - Delhi, Mumbai, Kolkata, Hyderabad, Bangalore, Chandigarh, and Jaipur - revealed that only 27% were aware of the concept of a Living Will.
What is a Living Will
A living will / Advance Medical Directive is a legal document that specifies a person's wishes regarding medical treatment; specifically treatments that will prolong life. This document is prepared in advance, well before it is actually needed and is used when a person is unable to make medical decisions for himself/herself due to his/her medical condition.
The concept of a living will, while upholding the right to die with dignity as a fundamental right, also has the following advantages-
a) It helps medical professionals to take difficult decisions and
b) It frees a patient's family from the guilt of having to take difficult decisions.
At the same time, in order to guard against the danger of misuse, the Supreme Court has laid down detailed guidelines relating to the preparation of the living will, as well as elaborate safeguards for execution of the living will to give effect to passive euthanasia.
Guidelines for the preparation of a Living Will
1. It should be a written document made voluntarily by the person (and not under duress) who should be of a healthy and sound state of mind with the capability to communicate his/her intent clearly.
2.It should contain a declaration that the person making it is aware of the consequences of executing the will.
3. It should mention that the executor may revoke the instructions at any time.
4. It should state clearly -
a) at which point in time treatment should be withdrawn
b) the circumstances of enforcing such a decision
c) the name of the relative who can decide on his/her behalf
5. It should be signed by the person making it in the presence of two witnesses, and countersigned by the jurisdictional Judicial Magistrate of First Class (JMFC) confirming that the will has been drawn up voluntarily.
The JMFC will maintain a copy of the will and forward a copy to the registry of the district court of that jurisdiction.
Another copy has to be handed over to the nominated official of the municipal corporation for safe custody.
Further, the JMFC also has to hand over a copy of the directive to the family physician.
Execution of the Living Will
When a person becomes terminally ill, with no hope of recovery despite treatment, the treating physician, when made aware about the living will, has to ascertain the genuineness and authenticity of the document from the JMFC, after which all the proper legal and operational procedures laid down to give effect to the living will must be followed.
a) A preliminary opinion has to be sought from a duly constituted hospital medical board which has to give their permission for the execution of the living will.
b) The hospital then has to inform the jurisdictional Collector about the clearance from the medical board.
c) The Collector shall constitute another medical board chaired by the Chief District Medical Officer who will convey the decision of the board to the jurisdictional judicial magistrate.
d) The judicial magistrate shall visit the patient at the earliest, and after examining all aspects, authorise the implementation of the Board's decision.
In cases where the medical board refuses to grant permission to execute the living will, the family will have to approach the High Court to decide upon the case.
As is evident from a perusal of the complex legal and operational checks and balances that have been laid down, from a practical point of view, the execution of a living will in India is easier said than done, thereby creating legal uncertainty around end of life decision making. This has emerged as a barrier in ensuring the quality of death and the right to die with dignity. As a result, terminally ill patients often spend their last days in Intensive Care Units in a bid to artificially prolong life at high emotional and financial costs to them and their families.
Authorities as well as those keen to register a living will are struggling in the absence of standard procedures at the central or state levels to implement the SC guidelines. Lack of legal certainty and fear of prosecution often prevents doctors from making ethically sound decisions on end of life care. The practical difficulties have triggered a demand from stakeholders for a comprehensive law on end of life care which would simplify the required protocols. Meanwhile, leading hospitals such as AIIMS Delhi have framed their own internal policies and the ICMR has developed guidelines for health professionals on "Do Not Attempt Resuscitation Orders".
Lastly, for the living will to be operationally meaningful, it is extremely important to have adequate palliative care facilities, which are woefully inadequate in the country.
Palliative Care
According to the WHO, palliative care is a multi-disciplinary approach that improves the quality of life of those patients suffering from life-threatening illnesses and also their families, by relieving suffering and pain - physical, psycho-social and spiritual. Although palliative care is a broad concept which can be provided at various stages of an illness, it is most closely associated with end-of-life care.
In the world of palliative care, practitioners distinguish between a "good death"and a "bad death."A good death is one where the patient dies peacefully, without pain, in the presence of loved ones and often, at home. A bad death is one where the patient dies alone, often in unbearable pain, typically after having his / her life prolonged by aggressive and dehumanising care, usually in an ICU. The palliative approach looks not just at difficult symptoms of an illness, but also on the overall benefits/side effects of possible treatments and the emotional, physical and financial stresses for patients and their families.
Palliative Care in India
The state of palliative care in India at present is quite dismal, making the country one of the worst places to die in. The Economist Intelligence Unit's (EIU's) Quality of Death Index 2015, which analysed the quality of palliative care facilities around the world, places India at the 67th position among the 80 countries that were surveyed, behind countries like Kenya, Peru and Ecuador.
As per recent statistics, only 2% of the people who need palliative care in India have access to it, far below the global average of 14%. Even the availability of morphine as a painkiller, despite a 2014 amendment to the Narcotic Drugs and Psychotropic Substances Act 1985, has been a major problem hampering improvements in end-of-life care.
In comparative terms, the southern states of Kerala, Karnataka and Tamil Nadu are at the forefront of providing end-of-life care, as over 90% of the palliative care centres are located in these three states. The Institute of Palliative Medicine , Kozhikode, was one of the earliest palliative care centres in the country. Started in 1993, the Centre does not limit itself to providing palliative care to patients, but has also made a significant contribution to the important issues of policy making and generating awareness about this concept which has assumed significance in the light of the recent Supreme Court ruling legalising passive euthanasia through the living will .What started in Kerala, is now gradually trickling to other parts of the country as well.
Lastly, for the living will to be operationally meaningful, it is extremely important to have adequate palliative care facilities, which are woefully inadequate in the country.
Palliative Care
According to the WHO, palliative care is a multi-disciplinary approach that improves the quality of life of those patients suffering from life-threatening illnesses and also their families, by relieving suffering and pain - physical, psycho-social and spiritual. Although palliative care is a broad concept which can be provided at various stages of an illness, it is most closely associated with end-of-life care.
In the world of palliative care, practitioners distinguish between a "good death"and a "bad death."A good death is one where the patient dies peacefully, without pain, in the presence of loved ones and often, at home. A bad death is one where the patient dies alone, often in unbearable pain, typically after having his / her life prolonged by aggressive and dehumanising care, usually in an ICU. The palliative approach looks not just at difficult symptoms of an illness, but also on the overall benefits/side effects of possible treatments and the emotional, physical and financial stresses for patients and their families.
Palliative Care in India
The state of palliative care in India at present is quite dismal, making the country one of the worst places to die in. The Economist Intelligence Unit's (EIU's) Quality of Death Index 2015, which analysed the quality of palliative care facilities around the world, places India at the 67th position among the 80 countries that were surveyed, behind countries like Kenya, Peru and Ecuador.
As per recent statistics, only 2% of the people who need palliative care in India have access to it, far below the global average of 14%. Even the availability of morphine as a painkiller, despite a 2014 amendment to the Narcotic Drugs and Psychotropic Substances Act 1985, has been a major problem hampering improvements in end-of-life care.
In comparative terms, the southern states of Kerala, Karnataka and Tamil Nadu are at the forefront of providing end-of-life care, as over 90% of the palliative care centres are located in these three states. The Institute of Palliative Medicine , Kozhikode, was one of the earliest palliative care centres in the country. Started in 1993, the Centre does not limit itself to providing palliative care to patients, but has also made a significant contribution to the important issues of policy making and generating awareness about this concept which has assumed significance in the light of the recent Supreme Court ruling legalising passive euthanasia through the living will .What started in Kerala, is now gradually trickling to other parts of the country as well.
