From Bicycles to Bedside: Lessons for Improving End-of-Life Care in India*

I recently cared for my terminally ill mother in India and was shocked by the distressingly low acceptance and use of end-of-life pain management. At the same time, I observed a sharp decline in bicycle use over the past 30 years in large Indian cities and wondered if this could offer insights into making end-of-life pain management more pervasive in India. Additionally, I reflected on why countries like the Netherlands embrace both end-of-life pain management and frequent bicycle usage.

Let’s unpack these thoughts one at a time.

Unfortunately, palliative and hospice care in India are very fragmented, which forced us to rely on hospital care to ensure my mother’s comfort. Even though we were at a top-notch hospital, we encountered significant hurdles: fear, lack of acceptance, and inadequate training around the use of morphine and other opioids for end-of-life pain management. This meant that a morphine infusion could only be administered in the ICU, isolating her from us. Thankfully, a kind nurse pleaded our case, and the hospital made an exception so she could receive a morphine infusion in the comfort of her hospital room, surrounded by her family.

Weeks later, I reflected on my experience. Despite India’s technological advances and growing middle class, end-of-life care remains inadequate. Sogyal Rinpoche’s “The Tibetan Book of Living and Dying” emphasizes minimizing pain and providing compassionate care for the dying. Why does India, a culture so respectful of the elderly, neglect proper end-of-life pain management?

Behavioral science can shed some light on this issue. The availability heuristic might lead people to overestimate the risks of opioids if they can easily recall negative stories or media reports about addiction, even if those instances are rare. Culturally, there is stigma around discussing death and dying openly. Pain is often seen as a natural part of the dying process that should be endured rather than treated aggressively.

Healthcare providers not trained in palliative care may experience cognitive dissonance when faced with end-of-life situations. This psychological discomfort can lead them to rationalize inadequate pain management practices rather than confronting the need for change. Considering social proof, people often look to others for cues on how to behave. If most healthcare providers do not prioritize pain management or use opioids effectively, others are likely to follow suit. While these are not exhaustive reasons for the current state of end-of-life pain management in India, they provide a better appreciation of the issue.

Could bicycle-use patterns hold some answers?

While spending time at the hospital, I commuted back and forth in an autorickshaw. The autorickshaw, a motorized three-wheeler open on either side of the passenger seat is built to deftly weave through crazy traffic. I hadn’t been in one for over 30 years and was now riding them four times a day, soaking up the joys of these bumpy rides — the smells, sights, and beeping horns that you don’t experience when riding in an air-conditioned car.

During one of these rides, I noticed that bicycles, once ubiquitous, had all but disappeared from the streets, replaced by scooters and motorcycles. I wondered what had happened.

The increasing wealth of the middle class has enabled them to upgrade from bicycles to motorcycles. Behavioral science principles, particularly the bandwagon effect, have contributed to the disappearance of bicycles. The prevalence of two-wheelers is also a product of social proof, where individuals emulate the behaviors of others in their community, reinforced by the constant visibility of two-wheelers, reminding everyone of their practicality and social acceptance.

Interestingly, both social proof and the bandwagon effect also partially explain why the Netherlands embraces end-of-life pain management and maintains frequent bicycle usage. However, cultural elements (focus on individual autonomy to decide whether to experience end-of-life pain) and wealth (ability to build and maintain robust infrastructure to support bicycles) play significant roles that account for the reversed behaviors compared to India.

So, what’s a viable solution?

The solution to making end-of-life pain management more ubiquitous in India requires a multifaceted approach, including better education and training for healthcare providers, regulatory reforms, and improved healthcare infrastructure and policies.

However, we could start with something smaller — making the invisible visible — increased public awareness. Most people don’t encounter the issue until they face the end of life of a loved one.

The Amrita Institute of Medical Sciences and Research Centre (AIMS) in Kochi, Kerala, is progressive in its training and approach to palliative care, embracing end-of-life pain management. AIMS and some cancer-related non-profits like the Indian Cancer Society and esteemed institutions like the Tata Memorial Cancer Center should consider partnering with large ad agency networks and celebrity spokespeople to make end-of-life pain management more acceptable and visible. This collaboration could expedite government-driven policy changes, ensure necessary training for physicians, and help provide the dignity and right to a pain-free passing for many across India.

Several other chronic disease patient and caregiver gaps remain, including patient and caregiver education and empowerment to better navigate their journey with clinicians who might not always have the time or motivation to do what’s best for the patient.

Where could we look for inspiration to solve for this?

*The examples and conclusions in this article are for readers to simply understand how heuristics and biases impact our daily lives. They are based on assessments of multiple behavioral science publications and personal examples. They are not based on any validated empirical testing.