Death literacy festival: How living wills are shaping India's end-of-life care

More than a decade ago, when Karnataka health minister Dinesh Gundu Rao’s brother suffered from an aneurysm and suddenly collapsed, the doctors confirmed he was ‘brain dead’. But the family had to go through turmoil and feelings of guilt before taking the tough call – to withhold life-sustaining treatment as it was a no-hope situation.

A living will or an advanced medical directive (AMD), executed by every living adult when in sound health, saves the family from emotional turmoil and helps the distressed family decide what’s best for the beloved one on the ICU bed without guilt or shame.

In March 2018, the Supreme Court, in the petition filed by NGO Common Cause, upheld the constitutional validity of citizens’ rights to autonomy in healthcare choice and allowed Indians to take charge of their last day.

The two-day ‘Good to go’ – India’s first death literacy festival organised by Pallium India and Vidhi Centre for Legal Policy, held in Bengaluru, flagged the challenges in pushing for living wills, implementation of end-of-life care laws in India. It called for integration of palliative care in hospitals, besides normalising conversations about death, advance care planning, illness and grief.

“Death literacy involves overcoming the taboo of discussing death and familiarising people with the various processes associated with dying, the options and rights available to them. The advanced care planning (ACP) is possible when with AMDs, designating healthcare power-of-attorney, do-not-attempt-resuscitation orders and organ donation pledge are in place," said Smriti Rana, head, WHO collaborating centre for training and policy on access to pain relief and Pallium India.

Stating that the living will, similar to a financial bill, was essential and not elitist, Rana said, "In Kerala, 40 percent of all those who wrote a living will are farmers and fishermen. While it allows greater autonomy in decision making, facilitates a dignified death, reduces the stress and anxiety of end-of-life patients and their caregivers, and cuts down unexpected out-of-pocket expenditure on disproportionate medical treatment. It also helps hospitals optimise their resources," explains Rana.

“Karnataka is the first state to implement the SC order of living will. But we are not sure how many have executed it. I plan to make an AMD to create awareness and set it in motion, said Rao, during his keynote address.

Hardik Dua, advocacy officer of Vidhi Centre for Legal Policy, traced how the decades-long advocacy led to landmark verdicts, paving the way for implementing the living wills.

“Aruna Shanbhag’s case was a landmark judgment which gave the right to die with dignity. The court called it the rarest of rare cases and empowered the high courts to grant the right to die only if the person was in a persistent vegetative state or in an irreversible condition. However, the patient autonomy was not guaranteed post the Shanbhag case, either. Following the 2018 (Common Cause case) judgment, the implementation came through. Now, the primary and secondary boards vet the cases to grant the right to die with dignity in the hospitals. The AMDs or living wills now allow a person to decide what kind of treatments they could refuse as the living wills serve as document that represents one's choices," said Dua adding that the living will could be executed only if person was in a persistent vegetative state, in an irreversible condition and no form of care could benefit him, or in terminally ill patients where any form of care could deteriorate the quality of life after the medical procedures.

Dr Rajani Bhat, consultant, interventional pulmonology and palliative medicine, Sparsh Hospitals, reminds that doctors should be conscious of the fact that they are not treating a disease but a person, who is a member of a family and has certain wishes for their future.

"I trained in the US, where honest conversation about the end of life and wishes were part of my training in the fellowship. We need to address these issues in critical care units, hospice, or the hospital. With advocacy, the situation in critical care units has changed over the last decade. Today, the ICU chief, the emergency rooms are all aligned with our thinking, where honest conversations are possible," said dr Bhat.

"Any person above 18 years can draft an AMD mentioning his goals of care after discussing with his physician and family. The person needs to nominate at least two people as the healthcare representatives (partners, family and friends) who will take the decision on your behalf. Sharing the AMD with the family helps reduce confusion," adds Dua.

Sweety Thomas, Chief of Staff, Ajit Isaac Foundation, highlighted the importance and role of philanthropic activities in evolving better models and concepts and changing the mindset through collaborative efforts for a cause like palliative care.

"A fast-aging population puts pressure on the healthcare system and the chronic illnesses and NCDs are an added burden. In 80 percent of cases, cancer is diagnosed in the advanced stages, calling for the need to integrate treatment protocols with palliative care. Philanthropic money can take risks to evolve better models to bring about a patient-centred, compassionate care-driven society," said Thomas.

Dr Roop Gursahani, consulting neurologist, PD Hinduja Hospital, put the idea of end-of-life care in perspective by stating that not more than seven per cent of people die suddenly, as the rest of the people had to go through a certain period of dying.

"One trajectory is of cancer known as the waterfall trajectory, where the patient recovers and suddenly one day the cancer takes charge before the final decline. Then, we have organ failures (lung and kidney) where the patient comes in and out of the hospital and sees a gradual decline, known as a looping trajectory. The old-age dementia cases are in the dwindling trajectory. The doctor can identify when a patient is going into their last stage. Unfortunately, the doctor fraternity foresees but avoids foretelling it. The trajectories help us put the signposts and help decide on the palliative care and make dying with dignity a priority," said Dr Gursahani.