On November 10, 2022, Dr. M.R. Rajagopal, the Founder and Chairman of Pallium India, spoke at the NIH National Cancer Institute Center for Global Health’s Global Cancer Research and Control Seminar Series to shed light on barriers and opportunities for research in low- and middle-income countries (LMICs).
Drawing from his experiences providing palliative care in India and advocating for policy-level change in India and globally, he highlighted the stark need to address the “elephant in the room.” Despite how affordable and achievable pain relief is, more than 80% of people in LMICs do not have access to pain relief. In addition to this error of omission, he cautioned that we must also pay attention to the error of commission: the burden of costly medical expenditures leads patients and their families to suffer the dramatic consequences of financial toxicity, with the greatest burden experienced by people in LMICs. In India alone, 55 million people suffer catastrophic health expenditures annually.
He further suggested that no understanding of suffering for patients in LMICs can be complete without expanding the concept of Total Pain, often evoked in palliative care. Total Pain is a concept that centers physical, social, emotional, and spiritual dimensions of suffering to prioritize solutions to the problems patients face. Dr. Rajagopal suggested that this framework must be broadened to encompass economic pain as well.
In light of these significant gaps, Dr. Rajagopal asked a piercing question whose answer has the potential to revolutionize and reorient research in palliative care and global health: “Are we looking at it all with a high-income country (HIC) lens? Do we know what exactly people in LMICs suffer from?” With 93.5% of publications in palliative care emerging from Europe and America, which comprise only 15% of the world’s population, while only 6.5% of publications hail from the rest of the world’s 85% of the global population, Dr. Rajagopal highlighted the importance of including researchers and communities from LMICs to guide knowledge and efforts to address the disproportionate burden of suffering these populations experience.
To address the significant disparity in palliative care research, “there needs to be a willful decolonization of palliative care through needs-based research that centers a LMIC lens,” he urged. Rather than implying any negative intention or harmful actions on the part of governments and individuals, by “decolonization,” Dr. Rajagopal refers to the ways that perspectives on palliative care needs globally are often inadvertently shaped by policy and practice in HICs rather than centering the needs and perspectives of people in LMICs. Thus, decolonizing palliative care research would enable us to understand gaps in palliative care efforts in LMICs by integrating local communities to more effectively fill the policy-implementation gap and promote access to essential medicines.
Although palliative care access has expanded worldwide over the past 20 years, thanks to the tireless advocacy of global palliative care practitioners and advocates, there is still so much work to be done to center the community work and research done in LMICs and the perspectives of the people who need relief most.