By recognising that “an adult human being having mental capacity to take an informed decision has right to refuse medical treatment including withdrawal from life-saving devices”, the court enabled Indians to create an advance medical directive, or a living will, containing a person’s wishes regarding their end-of-life medical treatment should they lose their capacity to take decisions or convey their wishes.

A year after the judgement, a survey of more than 2,400 urban Indian respondents has found that while 88% of respondents wanted to decide their line of medical treatment during the last days of their life, only 27% were aware of the concept of a living will and only 6% of these had actually created a living will.

The Living Wiell Survey was conducted by healthcare service provider HealthCare at HOME (HCAH) across seven cities–Delhi, Mumbai, Kolkata, Hyderabad, Bengaluru, Chandigarh and Jaipur–with a sample size of 350 to 400 per region. There were an equal number of male and female respondents, who had been hospitalised for more than a day in the past year.

About 85% of the respondents said they wished to cause the least mental and financial trouble to their family during their last days, the survey found. Yet, 74% of respondents had never given any serious thought to dying and had not secured their family financially in case of their death, while 26% of respondents had.

Of the four age cohorts that the respondents were equally divided–25-35 years, 36-50 years, 51-60 years and 60+ years–senior citizens (60+) had the highest percentage (94%) of people wishing to cause the least trouble to their family members during their last days. Yet, only 80% of people in this age group–the least amongst all age groups–wanted to decide their treatment line during the last days of their life. In the age group of 25-35 years, 97% of respondents wanted independence of choice of treatment line, the highest among all age groups.

In the 25-35 years age group, 36% of respondents were aware of the concept of a living will, with this age group showing the maximum awareness. Only 21% people in the age group of 51-60 years knew about living wills, making this group the least aware.

Among respondents who were aware of living wills, 17% of those aged 60+ had a living will, while less than 1% in the age group of 36-50 years and none in the age group 25-35 years had one.

Source: The Living Wiell Survey, 2019

The survey was guided by the End of Life Care in India Task Force (ELICIT), whose members include the Indian Association of Palliative Care, the Indian Society of Critical Care Medicine and the Indian Academy of Neurology.

One of the objectives of the survey was also to make the people aware about the concept of a living will, according to HCAH.

Post understanding, 76% found the concept highly relevant for themselves, 15% required more information to make an informed decision about drafting a living will and 9% found a living will irrelevant to them and immoral. The latter stated its misuse and inability to decide the course of their last moments themselves, as reasons for not wishing to draft a living will.

Source: The Living Wiell Survey, 2019

Of the 76% people who found a living will relevant to them, 91% said they wished to discontinue any life support system in case they were declared terminally ill on artificial life support with no or marginal hope of recovery.

“The survey clearly shows that with more awareness around living wills, many more Indians would be able to take such informed decisions,” said RK Mani, head of ELICIT, in an email statement.

(Sharma is an intern with IndiaSpend.)

Courtesy: India Spend

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“To deprive an individual of dignity the end of life is to deprive him of meaningful existence,” said Justice Chandrachud while allowing the living will for passive euthanasia. The court said the life support can be removed only after the statutory medical board declares the patient to be incurable.
 
The entire verdict may be read here.

 
The Euthanasia Debate
Euthanasia is the practice of intentionally ending life to end paid and suffering. It has always been a hotly debated subject in India where while on one side the argument is for the right of a person to die with dignity and avoid suffering, the counter argument is how it can be misused against members of the family to in case of property disputes. There are also religious factors as the act of euthanasia is often equated with suicide by many religions which is why priests and heads of different religions have had many different reactions on the subject from full support to outright condemnation.
 
Constitutional Values
The SC judgement may have elicited a variety of responses from different sections of society and interest groups. However, it cannot be denied that the court has upheld constitutional values of liberty, dignity, autonomy and privacy in delivering this landmark verdict. Justice D Y Chandrachud held in his separate and concurring judgement that, 
 
“Every individual has a constitutionally protected expectation that the dignity which attaches to life must subsist even in the culminating phase of human existence.
 
“The right of an individual to refuse medical treatment is unconditional. Neither the law nor the Constitution compels an individual who is competent and able to take decisions, to disclose the reasons for refusing medical treatment nor is such a refusal subject to the supervisory control of an outside entity.”
 
Types of Euthanasia
A distinction needs to be made between the two kinds of euthanasia, active euthanasia where life is ended usually with a lethal injection and passive euthanasia where life support systems are turned off and medical treatment is discontinued in case of an irreversible persistent vegetative state. The SC has permitted a ‘living will’ allowing passive euthanasia and that too under specific circumstances and under strict guidelines. It is in this context that the concept of a ‘Living Will’ is significant.
 
What is a Living Will
A ‘Living Will’ is made by a person to give directions to medical professionals, family and friends to not prolong life by artificial means in case of an incurable condition that leads to a vegetative state, or what is called ‘being in a coma’ in common parlance. In the context of the current matter, it muct be made by a person in their sound mind and without pressure or coercion.
 
The Aruna Shanbaug Case
The Euthanasia case in the Supreme Court brought back memories of Mumbai nurse Aruna Shanbaug who spent 42 years in a vegetative state after being brutally sexually assaulted by Sohanlal Valmiki, a ward boy at KEM Hospital in 1973. Activist Pinki Virani had moved court to end Aruna’s suffering by ‘mercy killing’ her. But the nurse of KEM Hospital who had been diligently looking after Aruna so well that not one bed sore developed in over 40 years, objected to this plea. Eventually, the petition was rejected by the Supreme Court in 2011. Aruna Shanbaug died in May 2015. She succumbed to a bout of pneumonia.

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