Planning the end: Families take charge at this clinic

At the clinic, discussions often centre on issues such as the role played by family members and local health representatives, and the legalities around the process. Simply put, the clinic educates individuals on the subject and attempts to dispel misconceptions

MUMBAI: Every Saturday morning, one of the consultation rooms at the PD Hinduja Hospital in Mahim attracts a very different set of visitors. They are not patients but come to discuss how they would want their lives to end – or, more precisely, how they would not want them prolonged.

Planning the end: Families take charge at this clinic

Set up in June last year, the hospital’s ‘Living Will Clinic’ has helped more than 100 people make critical end-of-life decisions and make a living will. Unlike a regular will, a living will is a legal document that specifies which life-sustaining medical treatments an individual would want to refuse if they become terminally ill or enter a permanent vegetative state.

At the clinic, discussions often centre on issues such as the role played by family members and local health representatives, and the legalities around the process. Simply put, the clinic educates individuals on the subject and attempts to dispel misconceptions.

“These are decisions people take when they are healthy and in a position to take them. It is not activated on the first day of hospitalisation; rather, it can be activated only in case of terminal illness and only when it becomes clear that no further treatment will be beneficial for the patient,” explains Dr Smriti Khanna, who heads the hospital’s Living Wills Clinic.

Many who decide to make a living will don’t want to burden their families with difficult decisions. “I have seen a relative shoulder a massive emotional, physical and financial burden as she struggled to handle her mother’s last days. Although she was a doctor, and it was evident her mother’s chances of survival were slim, it was very difficult for her to take a call. I don’t want my family to go through that,” said Aditi Date, who didn’t go through with the process for want of guidance.

Making a living will ensure that doctors and caregivers honour an individual’s choices about end-of-life treatment. “There is a nationwide repository for living wills on the anvil but it is not yet functional,” says Dr Khanna.

“We have a long way to go. In countries like the US, living wills are incorporated within the public health system, where doctors initiate discussions on the subject with their patients and take it forward. Even so, only 50% of the population has signed up for it. So, we have a long way to go here.” observes neurologist and epileptologist, Dr Roop Gursahani, from the End of LIfe Care in India Taskforce (ELCIT), the moving force behind Hinduja Hospital’s clinic.

“We are decades behind since we are yet to incorporate the process as part of the states’ policy. These are not easy conversations and it will take some time for things to percolate. It is important to encourage conversations around this,” he says.

How to make a living will

After drafting a living will, an individual must get it notarised by a lawyer and then registered with the health department of their local municipal ward office. A copy should be given to one’s local general practitioner, although optional, and another to one’s custodian or immediate family members.

When doctors find further treatment not beneficial for a patient, and the individual is unable to make decisions for themselves, family members can share a copy of the living will with the hospital. The living will needs approvals at two levels. At the primary level, the treating doctor along with the head of the treating department and the institutional medical head, must approve the will. After that, the will is sent to a secondary committee, which includes the medical superintendent of the government-run JJ Hospital (for Mumbai and suburbs), two subject experts and an empanelled expert. It is only after their nod is received that the hospital can implement the directions given in the living will.