I’m interested in palliative care medicine, and in my travels I have always felt drawn to the different ways in which people and cultures view death and dying. Our morning spent touring the ICUs of both the private and subsidized hospitals at SRMC with Dr. Ram, the new chief of Intensive Care, got me thinking about end-of-life care in countries like India where resources can be limited and suffering seems far-reaching.
Dr. Ram stopped at the foot of each bed and presented the patients one by one to us. Early on, he remarked on just how many patients in his ICU should not have been there in the first place. For example: an elderly man with a history of dementia and multiple strokes now with respiratory failure, or a middle-aged woman with metastatic cancer admitted with sepsis. With the rising prevalence of non-communicable diseases in India in conjunction with more sophisticated healthcare delivery and an improving economy, more patients are reaching end-stage disease. But Dr. Ram is troubled by how often he sees escalation of care in instances when a palliative approach would better serve the patient. It is not that death and dying are taboo topics in India. Shrines to loved ones who have passed adorn family homes. A man will symbolically shave his head to mark a death in the family. Clinicians here seem to face some of the same barriers as we do in the States when it comes to shifting from curative to palliative intent. Face time with patients is limited, training on how to have end-of-life discussions is minimal, and acceptance of death can often feel like defeat or failure.
But I was interested to learn about the unique ways in which India has been challenged to meet the scale of need for palliative care. In access to end-of life care, India ranked 67 out of 80 countries in 2015. Of course a critical part of providing care to the dying is optimal pain control. Interestingly, India is the world’s largest legal producer of opium for medical purposes, but most is exported to the West. Morphine was also tightly restricted in India until recently and so generations of physicians are unfamiliar with its use. Furthermore, to give patients the dignity of having a peaceful death at home, where most prefer to be, the support of caregivers who are skilled in palliative care is needed. Families who live below or near the poverty line cannot afford relative luxuries like a visiting nurse.
So far, India’s success story has centered around a community-based approach to palliative care in the small southwest state of Kerala. While Kerala is home to only 3 percent of India’s population, it provides two-thirds of the country’s palliative care services. The state’s government provides funding for community-based care programs and it was also one of the first to relax narcotics regulations for use at end-of-life. Palliative care clinics and home visit services are bolstered by a network of volunteers. You can read more about the impressive movement here: https://www.theatlantic.com/health/archive/2017/02/india-palliative-care/517995/.
Every community of providers faces its own challenges in initiating and providing meaningful end-of-life care. It will be interesting to see how the field of palliative care continues to grow and adapt here in India. I will be following along.