By Aparna Sai Ajjarapu; Ann Broderick, MD, MS, The Permanente Journal
An estimated 1.5 billion people experience chronic pain across the globe, and an estimated 61 million people endure unrelieved serious health-related suffering (SHS) worldwide.1-4Therefore, one can estimate that 10 million people with unrelieved SHS live in India, which is home to one-sixth of the global population. The overall prevalence of chronic pain in India was estimated at 13% in 2014.5 Cancer is the major source of unrelieved pain in India6 and more than 1 million people develop cancer every year,7 and an estimated 80% of those patients are believed to live with significant pain.8
Pain, a subjective experience for every person, is influenced by many factors including genetic characteristics, general health status, comorbidities, the brain’s processing system, the emotional and cognitive context in which pain occurs, and cultural and social factors.9,10 As defined by the World Health Organization, palliative care is intended to prevent and relieve “suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”11
In India, palliative care is accessible to fewer than 1% of the people who need it.12 In its absence, treatment is disease-focused with little regard for SHS.13 The magnitude of this need is best illustrated by reported opioid consumption across countries. Global mean morphine consumption in 2013 was 6.27 mg/capita; per capita consumption in India was 0.11 mg, ranking 113 of 139 countries. Morphine equivalent (ME) rates in the highest-use countries such as Canada (723 mg/capita ME), the US (718 mg/capita ME), Australia (454 mg/capita ME), UK (241 mg/capita ME), France (213 mg/capita ME), and Italy (204 mg/capita ME) demonstrate the global misdistribution of opioids.14 These high ME rates include the therapeutic use and the misuse/abuse of opioids in those countries.
In contrast to high-resource countries, in low-resource countries, morphine consumption is a surrogate measure of access to palliative care. The state of Kerala in southwest India, with a land mass of 1% and a population of 3% of India, has managed to make noteworthy advances in the field of palliative care.15 Although the India national average is 0.11 mg/capita ME, consumption figures in Kerala are about 1.56 mg/capita ME.16 The relative success in Kerala has been achieved with robust community involvement, and palliative care services are being delivered by an informal network of health care professionals and volunteers with significant input from the government.17 Pallium India, a charitable trust formed in 2003 in Trivandrum, Kerala, provides palliative care to underserved populations in and around Trivandrum with inpatient and outpatient care, home visits, and advocacy, and works with local institutions in 16 of India’s 29 states to promote palliative care.
During the 2015-2016 University of Iowa Winterim Program (a 3-4 week intensive study-abroad program at Pallium India with courses led by University of Iowa faculty), students learned about the biological, psychological, and sociologic aspects of disease; how to care for and treat patients with terminal and chronic illness; drug restrictions on pain medication and opioid use in India; and the differences between the health care systems in the US and India. For many of these health science preprofessional students, this was their first exposure to palliative care.
Students also shadowed clinical teams during home visits. The use of empathic listening to treat and assess patients sharply differed from our own experiences as patients in health care in the US. We depict the pain stories of six patients treated by Pallium India with the goal of understanding the importance of palliative care and empathic listening for patients with SHS.