Death Literacy: It’s Time We Break the Taboo and Talk about Dying

Poor death literacy in India causes unnecessary suffering. Open conversations and laws can change this.

Death literacy makes it possible to gain access to, understand and act upon end-of-life options.

(Photo: FIT)

The author’s (Smriti Rana) mother was diagnosed with cancer of the uterus in 1998. Since they lived in a small hill station with no treatment options, they had to move to her aunt's house in Uttar Pradesh, where it was possible. Away from home, getting treated in a big, crowded cancer centre, she underwent the most aggressive treatments available.

As the disease tore through her body, the pain skyrocketed. The cancer destroyed her lower spine, rendering an avid outdoors person immobile. But in the 10-drug long prescription that she took beyond the chemo, not one was for pain relief.

Nuclear medicine was tried. Several ICU admissions followed. In the end, it was the patient who insisted on no further treatment and demanded that she be taken home, where she died in agony, but surrounded by family.

This is not a unique story. There are a million versions of it, all with the same ending – a painful death, a family scarred for life. That this is the script that most families relive, is a travesty.

'Shhh...Don't Talk About Death'

Death is the inevitable consequence of living. But we do not like to speak of it. Progress in science and medicine has made us a death-denying species.

Whether arrogance or folly, the result is that by denying and defying it, we inflict unnecessary and avoidable suffering upon ourselves when our time comes.

In 2010, The Economist Intelligence Unit created a Quality of Death Index by which it ranked countries in terms of availability and quality of end-of-life care. It relied on a set of 24 indicators across 4 categories.

In 2010, 40 countries were ranked, and India came in at an abysmal 39. 2015 saw India at 67 out of 80 countries and in 2021 India showed marginal improvement by ranking 59 out of 81 countries surveyed.

Multiple reasons have led India to this position.

Death is seen as something inauspicious and, therefore, not discussed in Indian families. Dying and death are more often associated with anxiety, panic, anger, frustration, fear, and misery.

The idea that death can be suffering-free is somehow outside our grasp and adds to the pessimism that surrounds the end of life.

The reality is that only 10-15 percent of us will be blessed with a sudden and painless death. The rest of us will likely die from a prolonged illness.

It is estimated that 70 lakh to 1 crore people in India experience serious health-related suffering towards the end of their lives. Is this suffering as inevitable as the event of death itself?

The phrase “quality of life” is used so blithely now that it often glosses over the complex web of moving parts that constitute a good or reasonable quality of life. For our purpose, it may make sense to consider what determines the ‘quality of death’.

‘Survival at All Cost’ Isn’t Always the Best Route to Take

We employ the vocabulary of war around illness. The patient is forced to “fight” for their life. We celebrate survivorship in a way that almost demeans those who don’t make it.

Cultural beliefs equate not opting for aggressive, expensive, hardline treatments with “giving up”, which in turn is considered a weakness. This is the case even when treatments may be futile. Doctors are taught that death means failure - professional and personal. All these factors, compounded by a profit-driven medical-industrial complex, push both healthcare workers and family members to extend life as much as possible, even when the treatment adds more to the suffering than the disease itself.

Their values or preferences are disregarded, whether they are in a condition to make their own decisions or not.

The vast majority of people, especially in the Global South, find themselves either expelled by an unaffordable healthcare system or, as Dr. Roop Gursahani, Consulting Neurologist and one of the founders of ELICIT (End of Life Care in India Task Force) says, “ground down between the unstoppable force of medical technocracy and the immovable rock of natural biology.”

A death in the ICU is now considered normal and translates to “trying one’s best” for the person. Anything short of that and caregivers or family members are made to feel like they haven’t done enough. “Please take him to the ICU and try your best to save him,” said the daughter of Ramesh (name changed), a 75-year-old gentleman with stage 4 lung cancer, to the author (Dr Parth).

Ramesh was brought to the emergency room with worsening breathlessness and poor sensorium.

Despite explaining Ramesh’s poor prognosis to the daughter, she asked to put him on a ventilator and shift him to the ICU. Ramesh passed away in the ICU the next morning, alone, surrounded by machines that were pushing air inside his lungs and forcing his heart to beat till it eventually gave up.

Compare this with Bhatia’s death. Bhatia, an 85-year-old gentleman, was bed-bound for the past three years. He had paralysis of both legs and was completely dependent on his son and wife. The family lovingly took care of Bhatia, knowing that he would eventually fall sick and require hospitalisation.

However, Bhatia frequently expressed his desire not to be hospitalised and to be with his family till the end. The family honoured his decision and did everything possible to keep him comfortable till he passed away on 18th June 2024, at home, surrounded by his loved ones.

After receiving home-based palliative care for the last one and a half years of his life, Bhatia experienced a pain-free and suffering-free death.

However, not everyone is fortunate enough to have a death like Bhatia.

As Dr Sankha Mitra, an oncologist, once said, “In India, the poor die in agony in neglect, the middle-class die in agony in ignorance, and the rich die in agony on a ventilator.”

Besides poor death literacy, a lack of legal clarity surrounding end-of-life care, and stringent laws blocking access to morphine and other opioids - drugs vital to reducing end-of-life suffering - have also resulted in India lagging in the Quality of Death rankings.

How Can We Improve Death Literacy in India?

As India currently lacks a law covering end-of-life care, the Supreme Court’s judgement in 2018 - Common Cause Vs. Union of India - with subsequent modifications in 2023, provides some guidance.

The judgement gives a mentally competent adult the authority to create an Advance Medical Directive or ‘Living Will’.

The Advance Medical Directive enshrines the individual's choices on the extent of treatment they desire in case of an irreversible illness.

It provides agency to the patient to designate a ‘Healthcare Power of Attorney’ to ensure that the patient's wishes are honoured when they are no longer in a position to voice their decisions.

However, most people are unaware of this judgement and that one has the power to choose how and where they would spend their final days.

A national-level Advance Care Planning Task Force has been convened under the aegis of the Indian Association for Palliative Care.

The group is working on a nationwide campaign to improve death literacy. The Vidhi Centre for Legal Policy, a partner in this Task Force, has created documents that answer FAQs about End-of-Life Care and the Law in India, a Ready Reckoner about end-of-life care and an updated template of the Advance Medical Directive and Healthcare Attorney Authorisation.

Lack of access to morphine is an additional significant barrier to a suffering-free death. The stringent requirements, coupled with harsh punitive action under the Narcotic Drugs and Psychotropic Substance Act, when combined with the fear and misconceptions related to morphine use, condemn the vast majority of those in pain to a brutal existence and excruciating death.

While laws will take their time to become death-friendly, it is essential to address the stigma around death.

We must include death in our daily conversations. We must plan for it much like we would for a journey we will embark on.

For healthcare providers, it is crucial to emphasize care over cure. From day one, it is important to teach medical professionals to treat the person and not the disease. And when the time comes, to be comfortable with death themselves.

Sherwin B. Nuland, a noted physician and author, likened doctors to pilots in terms of their training and the responsibility they bear for their patients.

He specifically emphasised the importance of rigorous training, continuous learning, and the need for precise decision-making under pressure, which are critical aspects shared by both professions.

In his book "How We Die: Reflections on Life's Final Chapter", he alluded to doctors being like pilots who have not been adequately trained to land the plane. Extending this metaphor leads to the logical conclusion - if you don’t learn how to land the aircraft, it will crash and destroy all aboard.

Therefore, creating a Living Will or an Advance Medical Directive is crucial to gaining control over one’s last day.

Considering the lack of clarity around this issue, Pallium India, a leading palliative care NGO from Kerala, is hosting a webinar on 11th July to educate and guide people on how to create a living will.

This is in response to an initiative taken by the Palliative Care department at the Kollam Government Medical College, and the event is supported by the Indian Association for Palliative Care.

Ultimately, the gaps are systemic and cannot be overcome overnight.

We must create a broader ecosystem where access to factors that facilitate a better quality of death is not dependent on local NGOs or champions from the medical fraternity.

The answers must be woven into the social fabric, and the fabric of the healthcare delivery system. A good quality of life and death is every human’s right.

(Smriti Rana is a palliative care provider and advocate for access to medicines for pain relief. She heads the WHO Collaborating Centre for Training and Policy on Access to Pain Relief under Pallium India. Parth Sharma is a community physician, researcher. He also leads the Oncology and Palliative Care research group at the Association for Socially Applicable Research (ASAR).)

Go to www.palliumindia.org for more info, telehealth services and a directory of services across India.