A couple of days back, I happened to read a very interesting article in The Times of India – about the Living Will.
Reading it, I went back to the most difficult days of our lives as a family, when we had to decide whether or not we wanted to give my mother the ‘aggressive treatment’ (put her on a ventilator). Somehow, we all knew that we didn’t want her to go through any more pain, and we would not want to take up the aggressive treatment; however, there was always that ‘What if’ factor.
- What if she could actually become better after she goes through the ventilator?
- What if she could speak and tell us that she wants us to take that route?
- What if one of us wants to take up the aggressive treatment?
I remember all of us (the immediate family members) meeting at my brother’s place to discuss the pros and cons, contacting other senior doctors and our in-house family members from the medical field to know about their opinion and finally when I was about to leave for the night, I went to see my brother who was pacing up and down, alone, in his room, he asked me –
“Are you sure? Is everybody convinced?” and I said an affirmative ‘yes’. How much did I cry, locking myself up in the washroom that night, thinking about the moment when I asked my unresponsive mother to give me some hint about what she wanted to say! How did my father sign the Do Not Resuscitate (DNR) document for her?
My mother always used to say –
If it is time to go, I must just go. I don’t wish to become bedridden and dependent on my family members. It would be so painful.
But she did become bedridden and dependent on us, her family, for about 15 painful months and to the extent that she could not talk to us in her final weeks!
This concept of Living Will looks like an option to convert one’s wish into reality when one would not be in a condition to speak up for himself/herself.
In simpler terms, a “living will”, also known as an Advance Medical Directive, is a legal document where individuals can specify their wishes regarding medical treatment in case they become incapacitated. This allows them to refuse life-sustaining treatment or specify their preferences for end-of-life care, ensuring their autonomy even when unable to communicate.
Living wills uphold an individual’s right to make decisions about their own body and healthcare, even at the end of life, promoting dignity in death.
The Supreme Court has recognized the concept of passive euthanasia through living wills, where individuals can refuse life-sustaining treatment, but not active euthanasia, which involves taking steps to end a life.
Of course, it is not as simple as it sounds, but definitely not as difficult as one may perceive.
The concept already existed in the Indian Legal system since 2018, but lacked clarity and had certain loopholes.
Dr. Nikhil Datar, a Mumbai-based gynecologist, played a crucial role in bringing the concept of Living Will to the forefront and pushing for legal frameworks that allow individuals to make advance directives about their end-of-life medical care. He was one of the first individuals to register a legally compliant Living Will and subsequently approached the Bombay High Court to ensure its proper implementation.
He filed a Public Interest Litigation (PIL) in the Bombay High Court, seeking directions to implement a suitable mechanism for passive euthanasia and for the speedy retrieval of living wills. His legal challenge led to the Maharashtra government being directed to create a public web portal for registering Living Wills and appointing custodians for these documents across different districts in Maharashtra, ensuring the safekeeping and proper execution of these documents.
Dr. Datar’s work has been instrumental in transforming the concept of Living Wills from a theoretical idea into a practical reality in India, empowering individuals to exercise their autonomy in end-of-life healthcare decisions.
(details about Dr. Nikhil Datar and his work procured from Google)
It will always be difficult to make such decisions for your loved ones. However, I feel that the Living Wills can be that invisible supporting hand on your shoulder from your loved one himself/herself for whom you would be making such a hard decision. One may sleep in peace knowing that they had just honoured what their loved one wanted.
Though what is still not clear to me is if this is available throughout India or not, as yet. From whatever I have read till now, Dr. Datar’s campaign helped make a major decision by the Bombay High Court – to assign BMC as the legal custodian of the Living Wills. What about the other states? If any of you have an answer to this, please type in the Comments section, and also, what do you think about the Living Wills?
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Image Courtesy: Photo by Sasha Joe on Unsplash
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