Volume 24, Number 6: June 2023
Building an Investment Case for Palliative Care
for Low- and Middle-Income Countries
By Maya Jane Bates, MD
IAHPC Board Member
When I met my colleague in the hospital corridor one day, I asked about her husband, who I knew was living with HIV and had been diagnosed with late-stage non-Hodgkins lymphoma. She told me about his recent death, detailing how the household had sold everything they had to pay for medical treatment during his illness, including their vehicle, house, and land. Her daughter had dropped out of college due to lack of money to pay her fees. My heart was heavy as I walked away, wondering how things might have been different, had they been able to experience good quality palliative care at the time he was diagnosed.
The need is great
Projections suggest that by 2060, 83% of all deaths with serious health-related suffering will occur in low- and middle-income countries, with the greatest increase in low-income countries. And yet, only 12% of those in need of palliative care globally are able to access it. This "access abyss" was laid bare by the comprehensive Lancet Commission on Palliative Care and Pain Relief1 in 2017. Progress toward equitable access to services remains slow.
Money talks
In 2015, Brian Cassel and colleagues from the Center to Advance Palliative Care wrote an article in the Journal of Pain and Symptom Management titled, "The Business Case for Palliative Care: Translating Research into Program Development in the U.S."2 The paper highlights several areas where health economic data supports a business case for palliative care, alongside clinical and moral arguments. Such data has supported improved access to early palliative care in hospital settings in the United States.
The paper includes the following statement: “Unless and until stakeholders—health system administrators, physicians, and payers—perceive a clear path to the financial viability of specialist PC programs, they will not support fully the development of such services.” This statement holds true in low- and middle-income countries where financing mechanisms for health care are rapidly evolving.
Poverty reduction & the case for PC
Despite progress in oncological treatment and care, research across nine South-East Asian countries revealed that 75% of people with cancer had either died or faced financial catastrophe one year after their diagnosis.3 Reducing poverty is a key driver for policy and action in many low- and middle-income countries and, as a palliative care community aiming to improve government funding for services, we must use this to leverage the case for palliative care.
With adequate palliative care, including immediate-relief morphine prescribed at appropriate doses, carers can return to farming or their jobs, safe in the knowledge that their relative is comfortable and cared for. By returning to work, albeit for limited periods of time, the patient's sense of purpose and participation in the community is maintained. Knowledge of disease, where requested, may support patients and families to reduce out-of-pocket expenditure on non-beneficial treatments while still ensuring access to pain relief and other medications to maintain quality of life.
PC within universal health coverage
The World Health Organization supports universal health coverage (UHC), which promotes access to quality health services without financial hardship for households, measured in terms of "impoverishment" and "catastrophic expenditure."
Impoverishment describes how many people fall below the poverty line as a result of out-of-pocket expenditures on health care. Catastrophic expenditure is variably defined, describing situations in which a certain proportion (typically between 10% to 40%) of total household income is spent on health care. I conducted a study in 150 households in Malawi, a low-income country in South-Central Africa, showing reductions in high levels of catastrophic expenditure (from 64% to 47%, which is still too high!) six months after diagnosis of advanced cancer.4 This is an example of early research from low- and middle-income countries suggesting that access to palliative care can support reduction in household poverty.
Working with colleagues for change
We are generally very thankful that the treatment imperative runs deep in medical and nursing practice. However, being able to recognize and acknowledge advanced disease, when cure may no longer be possible, is an equally important skill. Timely conversations that allow adjustments in goals of care releases individuals and their loved ones to a broader consideration of what is important to them, and where they want to be cared for, during a critically important time.
And, finally, a future focus
I am thankful for all that colleagues, patients, family members and friends in Malawi have shown and taught me over the years I was living there. The courage and resilience of those living with life-limiting disease in the context of extreme poverty are unbelievable. Their suffering is, at times, unimaginable. An investment case is needed to convince stakeholders of the economic arguments to support palliative care—gathering stories and data that reflect local contextual realities. Where this research helps to ensure access to care, and preventing and relieving some of this suffering, it will be a job well done.
Read Maya Jane Bates' bio.
References
- K FM, Bhadelia A, Rodriguez NM, Arreola-Ornelas H, Zimmerman C. The Lancet Commission on Palliative Care and Pain Relief—findings, recommendations, and future directions. Lancet 2018; 6(Special Issue): S5-S6. DOI: 10.1016/S2214-109X(18)30082-2
- Cassel JB, Kerr KM, Slaman NS, Smith TJ. The Business Case for Palliative Care: Translating research into program development in the U.S. J Pain Symptom Manage 2015; 50(6): 741-749. DOI: 10.1016/j.jpainsymman.2015.06.013
- ACTION Study Group. Financial Catastrophe, Treatment Discontinuation and Death Associated with Surgically Operable Cancer in South-East Asia: Results from the ACTION Study Group. Surgery 2015; 157(6): 971-982. DOI: 10.1016/j.surg.2015.02.012
- Bates MJ, Gordon MRP, Gordon SB, Tomeny EM, Juula AS, et al. Palliative Care and Catastrophic Costs in Malawi after a Diagnosis of Advanced Cancer: A prospective cohort study. Lancet 2021; 9: e1750-1757.