On March 9 last year, a Supreme Court judgment declared “the right to a dignified life up to the point of death including a dignified procedure of death,” a fundamental right under Article 21 of the Constitution.
The Court recognised that “an adult human being having the mental capacity to take an informed decision, has the right to refuse medical treatment including withdrawal from life-saving devices”. This pronouncement enables Indians to create an advance medical directive, or a “living will” containing their wishes regarding end-of-life medical treatment in case they lose capacity then, to take informed decisions.
A year after the judgement, a survey of more than 2,400 urban Indian citizens found that while only 27% respondents were aware of the concept of a living will, only 6% of these 27% had actually created one. Eighty-eight per cent of the respondents meanwhile, preferred to decide on the line of medical treatment for the last days of their lives.
This Living Will Survey was conducted by healthcare service provider HealthCare at HOME across seven cities – Delhi, Mumbai, Kolkata, Hyderabad, Bengaluru, Chandigarh and Jaipur – with a sample size of 350-400 people per region. HealthCare at HOME surveyed an equal number of men and women who had been hospitalised for more than a day in the past year.
About 85% of the survey’s respondents said they wished to cause the least possible mental and financial trouble to their family in their last days. Yet, 74% of the respondents had never given any serious thought to death or secured their family financially in case of their death. Only 26% had.
Respondents were equally divided into four age cohorts – 25 years to 35 years, 36 years to 50 years, 51 years to 60 years and above 60. Of these, the last category, senior citizens (above 60), had the highest percentage of respondents (94%) wishing to cause the least possible trouble for their family in their last days. Yet, only 80% of the respondents in this age group – the least amongst all age groups – wanted to decide on the line of treatment for the last days of their life.
Meanwhile, 97% of the respondents from the age group of 25 years to 35 years, wanted independence in the choice of treatment line – the highest amongst all age groups. Thirty-six per cent of the respondents from this age group were aware of the concept of a living will, making them the most aware age bracket. In contrast, only 21% of the respondents from the age group of 51 years to 60 years knew about living wills, making them the least aware among those surveyed.
The survey found that of respondents who were aware of living wills, 17% of those older than 60 had a living will, while less than 1% in the age group of 36 years to 50 years, and none in the age group 25 years to 35 years had one.
The survey was guided by the End of Life Care in India Task Force, 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 spread awareness about the concept of a living will, said HealthCare at HOME.
After understanding living wills, 76% of the participants found the concept highly relevant for themselves, 15% said they required more information to make an informed decision and 9% found living wills irrelevant or immoral.
Of the 76% respondents who found living wills 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 make informed decisions,” said RK Mani, head of End of Life Care in India Task Force, in an email statement.
This story first appeared on IndiaSpend.
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