Living will is the way to go, say Mumbai doctors

After SC simplified guidelines of passive euthanasia, doctors in city have been quick in working towards having an advance directive regarding their treatment in case disease affects their faculties

Mumbai: Well-known paediatrician and neonatologist Dr Rashid Merchant wants to have some degree of control over his death. To realise this desire, the 77-year-old Bandra resident, who is battling advanced stage of prostate cancer, along with his 79-year-old wife Suraiya are in the process of notarising their ‘living will’.

Mumbai, India - March 11, 2023: Dr. Vivekanand Rege poses for the photo at his residence, at Mahim, in Mumbai, India, on Saturday, March 11, 2023. (Photo by Bhushan Koyande/HT Photo) (HT PHOTO)

A living will is an advance directive that outlines a person’s wish concerning their medical treatment in the event of her/his inability to express an informed consent towards medical procedures.

“No one knows when one will die. We all have some idea as to how we’d like to exit from this world, but no one has any control over it,” said Dr Merchant, who was diagnosed with prostate cancer eight years ago. “I am a strong advocate of wanting to have control over my exit.”

Dr Merchant wants his will to state that if he suffers from an incurable and irreversible ailment or lapses into unconsciousness with little prospect of improvement, he prefers to forgo any measures to artificially prolong his life. Furthermore, the document emphasises the importance of prioritising the best possible pain management, irrespective of any side-effects.

Less than two months after the Supreme Court (SC) on January 24 simplified guidelines governing the execution of passive euthanasia, including cutting down the red tape in preparing a living will, doctors in Mumbai have been quick to embrace the change.

Five years prior, in 2018, the Supreme Court legalised passive euthanasia and recognised the “right to die with dignity” as an integral component of the fundamental Right to Life under Article 21 of the Constitution.

Dr Nikhil Datar, renowned gynaecologist and judicial activist who was instrumental in extending the abortion limit from 20 weeks to 24 weeks, registered his living will on February 25. Since then, Dr Datar said he has received as many as 100 requests, largely from doctors, to help them understand and make their living will.

“The way forward is still not easy but neither is it very difficult. I made the living will because I believe in having a control over medical treatment in case I end up in an incapacitated state, and also want to help others to do the same,” said Dr Datar. “With more people sending their living wills to the local corporation (the guardian body), the government will have to designate a custodian as per SC guidelines to look after the living wills.”

Dr Datar is currently assisting the Merchants and well-known dental surgeon Dr Vivekanand S Rege to notarise their living wills. Incidentally, Dr Merchant has been the driving force behind Dr Datar in promoting living wills in India.

For 62-year-old Dr Rege, the idea of writing his living will stemmed from having to discontinue his practice in 2018 owing to diabetic neuropathy in both his hands and feet.

“My feet are numb along with a few fingers on both hands. Practicing dentistry needed foot control, which I lost due to the neuropathy. That is when I thought of creating a living will, but the Supreme Court’s laid down process was cumbersome then,” said Rege. “Now that the apex court has simplified the guidelines for living will, I am set to notarise mine.”

The Mahim resident, who is also being treated for suspected pancreatic tumour at Tata Memorial Hospital, Parel said his living will will also include his wish to donate his organs.

“The idea of a living will is to let my relatives and doctors know about my healthcare decision if I ever lose my decision-making capacity due to physical or mental instability. I also wish to donate my body for medical study, and after the study, my body should be buried. I wish that skeleton and teeth be used for teaching dental students,” said Rege.

For these three doctors, a living will is the solution to their predicament of being unable to express informed consent towards medical procedures when incapacitated.

Dr Merchant recalls the instance of a friend who suffered a cardiac arrest while at work. She was resuscitated only after suffering severe brain damage, forcing her to live in vegetative state till death.

“She lived in a vegetative state for 49 months. A living will could have given her parents, doctors, and in-laws the power to make decisions regarding her care. I would often wonder, if I land up in the hospital and they start resuscitating me, how do I tell them, ‘Please do not’,” said Dr Merchant, emphasising that living will paves the way to have some degree of control over the circumstances of death.

He added that unlike India, euthanasia is legal in Switzerland. “But going there is not a practical option. Though I am of able body and go to work, there are days I am in severe pain. I am in Grade IV metastatic stage and I know I have a marathon disease to fight. I do want an option of euthanasia,” said Merchant.

To further the concept, the Association of Medical Consultants (AMC) have decided to devise a standarised e-format for creating a living will. Stating that it took years to simplify the procedure of filing a living will, Dr Lalit Kapoor, president, Federation of Association of Medical Consultant India and AMC member, said, “We are currently studying formats from other countries, based on which we are in the process of making certain changes in our own format.”

Meanwhile, it’s been two weeks since Datar notarised and sent his living will, as per protocol, to municipal commissioner Iqbal Singh Chahal. The apex court guidelines state that the civic body should appoint a custodian for their area for the same. Since a custodian has not been appointed in the civic body, Datar sent his to Chahal as his custodian. But he is yet to receive a reply.

“I am helping Dr Merchant and Dr Rege to notarise their living will because I believe in the concept and want to help others,” said Datar. “It’s only when more doctors and other citizens come forward to notarise their living wills, civic bodies will be forced to appoint a custodian.”

BOX:

What to include in the living will and how it works?

Living will can be made on a plain piece of paper. Stamp paper not required.

It should primarily include what one wants relatives/friends/doctors to do in terms of healthcare when a person is incapacitated to take decisions.

It should mention the person’s name (proxy holder) who will take decisions on the person’s behalf in such condition.

All medical conditions (eg: terminally ill, demented) where you want your relatives to take decisions based on your instructions, should be mentioned.

You need two witnesses to notarise the will.

While one copy has to be kept with the person who is supposed to take decisions on your behalf, the other has to be sent to local civic body, the custodian.

During the execution of the will, ‘Will’ produced to the doctor by the proxy holder will be verified with the ‘Will’ copy of the custodian and executed.