Sujata knows that this is not a document that is recognisable by law. Not yet. But to her it matters to have it in place, if only to save her family members from having to take a tough decision if and when the time comes. “In my own family, we all knew what one of my relatives would’ve wanted though it was never discussed. Nobody wanted to take that decision. I don’t want to cause a similar burden,” says Sujata.
More people seem to be exploring ways to make the last exit peaceful by preparing ‘advanced health care directives’ just as it is done abroad. More than 1,000 people have been sent a free template of ‘Ichha Maran’ (living will) prepared by Mumbai-based The Society for the Right to Die with Dignity (SRDD) in the last three years, says Dr Surendra Dhelia, secretary. Sujjain Talwar, partner at ELP law firm has been getting queries about living wills in the last 10 years but so far it has been NRIs who get themselves one.
Living will is legal in many states in the US with president Barack Obama famously declaring in 2009 that he and wife Michelle have them. Many European countries, especially Germany, Netherlands, Switzerland and UK, allow people to spell out clear-cut guidelines about treatment, authorize others to take medical decisions on their behalf or opt for physician-assisted euthanasia.
Sujata says she heard about living wills from relatives in the US. “I thought it was a practical thing to have,” says Sujata. Especially after seeing a friend slip into a coma for six months after a delayed diagnosis of meningitis, and see her family struggle. “She died naturally. But the six-month hospital bill was so high that the family had to sell their house in Juhu and move to a smaller place. I didn’t want to burden my family like that,” she says.
For Sujata, making the document was a DIY project in 2007 with the aid of the internet. A revised version in 2009 specifies what to do in various scenarios, from agreeing to morphine for pain relief if she gets terminal cancer, to steps to withdraw medication in case of serious physical or mental illness. SRDD founder Minoo Masani, the late author-parliamentarian, prepared the first draft of Ichcha Maran years ago.
“It is derived from the advance directive used in most developed countries. It allows a patient to tell in advance the type of treatment he should receive if and when he goes into a state where he may not be able to communicate,” says Dhelia.
The doctor, who had seen his father and grandfather suffer, adopted a revised draft three years ago for himself. He too, like Sujata, has left copies with select friends and family hoping that it will persuade them to follow his wishes. “Passive euthanasia is legal now after the 2011 SC judgment. But it comes with a few caveats and fulfilling those are time-consuming,” says Dhelia. A court-appointed committee has to look into any requests to withdraw medical support.
Elder care institutions feel that living wills with inbuilt safeguards can help the elderly and their family. Sheilu Srinivasan, founder-president of Dignity Foundation, says children living abroad insist that their aged parents shouldn’t be hospitalized in case of worsening health. “At Dignity Lifestyle home there are many such parents. Children keep sending money to take care of parents who have dementia or are in a vegetative state as they have no other option. We are caught in a tough situation,” says Srinivasan.
A Supreme Court judgment in 2014 talks about the complexity of the situation while hearing a petition filed by NGO Common Cause for legalizing living will and power of attorney authorization. The three-member SC bench has in fact referred the matter to a constitution bench of the court for consideration. It also stated that “In view of the inconsistent opinions rendered in Aruna Shanbaug and also considering the important question of law involved which needs to be reflected in the light of social, legal, medical and constitutional perspective it becomes extremely important to have a clear enunciation of law”.
Sujata has penned down her reasons to her family. “I believe the right to fix the last supper lies with the individual. Executing my wish will be easier and leave with them with no guilt but relief in being in a position to help me when I can’t do so myself.”
* Living will or advanced health directive is a document where a person tells what to do if terminally ill * Clear-cut guidelines about treatment or withdrawal of it, authorize others to take medical decisions or opt for physician-assisted euthanasia wherever available * Legal in most states in the US; Barack Obama and Michelle Obama have such wills * Similar directives operational in Netherlands, Germany, Italy, Switzerland, UK in varying degrees * Anyone can make such a document in India using free samples on the internet or from The Society for the Right to Die with Dignity; no legal validity as of now .
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