It Takes a Village: Bringing Palliative Care to Ethiopia

In Ethiopia, there is a great need for culturally relevant, novel, sustainable palliative care interventions. Amharic is the national and ancient language of Ethiopia and is interwoven with subtlety and vaguely. Sam-enna warq (“wax and gold”) is a traditional Amharic verse, laden with double entendres: there is a literal meaning to words (wax) and then there is the hidden meaning (gold). ¹ This second meaning, the gold, is the truest meaning. Iddirs are centuries-old, indigenous neighborhood organizations that provide care and support for families during the time of a death. In this report, we will describe the scope of the problem, including delivery challenges, as well as downstream financial consequences that occur in the absence of palliative care. We will then conclude with an example of a solution that is locally led, novel, innovative, and sustainable, delivered through traditional, informal Ethiopian neighborhood organizations called iddirs. The objective of our work is thus to assess the potential for a new, expanded and modern role for iddirs in home delivery of palliative care.

The burden of disease in Ethiopia is tremendous and marked by a growing prevalence of noncommunicable conditions: WHO reported over 627,000 deaths in 2019. Over 70,300 incident cancer cases and over 50,000 cancer deaths occur annually (with two thirds among women), though this is likely a gross underestimation due to lack of screening programs and health seeking behaviors. Critically, five-year survival from time of a cancer diagnosis is poor due to late stage at presentation, poor access to care and limited treatment options. ² Women are disproportionately affected economically for a number of reasons, including gender roles within a traditional society, which may impact care-seeking behavior, the role of caregiver and a disadvantaged position when it comes to land ownership and inheritance, in the case of the death of a spouse.^3,4

Profound poverty and limited health care resources further magnify the impact of disease in Ethiopia. Ethiopia has a population of 120 million people, of whom 27% live in extreme poverty, defined by the World Health Organization as under $2 U.S. Dollars per day. ⁵ In Ethiopia, individual and societal impacts of poverty on health are exacerbated by limited health care resources, which fosters late presentations of illness, scarcity of treatments, and ineffective supports for caregiving. Known a decade ago as the “African tiger” for its burgeoning economy, Ethiopia has fallen into an ongoing morass of ethnic and civil conflict that has divided the country, killed well over a half million citizens, and is further undermining Ethiopians’ health and prospects. The impacts of this disease burden and poor access to health care include not only physical suffering but also financial consequences including medical impoverishment. Many disease-modifying treatments are paid for out-of-pocket, at high cost. Families struggling with poverty may be forced to sell major assets such as wedding gold, farmland, or their homes in order to pay for care for their family members with late-stage disease. ⁶ Out-of-pocket payments for medical care and lost wages have been reported to be multiple times an average yearly salary in Ethiopia at 5,810 Ethiopian birr (140.8 USD) and 74,900 Ethiopian birr (1814.9 USD), respectively. Optimistically, previous work in this setting demonstrated that in-home palliative care in conjunction with disease-modifying treatments and started at the time of diagnosis of a new cancer could be provided at low-cost ($19 USD for duration of care) compared with other treatments. ⁷

Palliative care in Ethiopia is in its infancy. Progress has largely been driven by a small number of dedicated practitioners and an Addis Ababa-based nonprofit organization called Hospice Ethiopia. ⁸ Hospice Ethiopia is the only organization delivering palliative care in Ethiopia and operates with a census of 50–55 patients per week, in a city of 9 million inhabitants, while also training staff at several Addis Ababa-based referral hospitals. The availability and accessibility of morphine and palliative care is limited, and palliative care has not yet been integrated into the health care system. Morphine consumption is estimated to be 0.01–0.1 milligram per capita per year in Ethiopia. ⁹ Palliative care is briefly mentioned in the national noncommunicable disease control plan. ¹⁰ A standalone national palliative care plan was created by the Ethiopian Ministry of Health; however, it has not been published. There is currently no evidence for the availability of pediatric palliative care in Ethiopia. Palliative care is neither publicly funded nor typically included in undergraduate or graduate medical education. Access to morphine is limited: by prescription, it is available exclusively through the pharmacy of a tertiary hospital however even this has been undermined by supply chain issues. ¹¹ A previous study at the only cancer center in Ethiopia found that approximately 96% of patients had moderate or severe pain, 24% were not prescribed any form of analgesia, 40% were prescribed morphine, and an additional 20% were prescribed morphine and another analgesic. ³ It is currently estimated that there are over 500,000 Ethiopians living with incurable disease that could benefit from palliative care. The estimated gap in Ethiopia between need for palliative care and access is over 95%, and the gap is profound in both rural and urban contexts.

Palliative care is not a substitute for disease-modifying treatments; however, it is a critically important supplement to them. One of the important benefits of palliative care that has consistently been demonstrated is its potential to mitigate use of inappropriate health care resources in later life. ¹² Under such conditions, the potential benefits of palliative care are substantial in improving appropriate health care allocation and reducing suffering. Recent work by the Lancet Commission demonstrates that access to palliative care is low cost compared with investments required in many curative or disease-focused therapies. ¹³ This benefit may derive from palliative care’s patient-centered focus on communication and treatment planning, but also from relieving crushing symptom burdens and supporting caregivers in the home and community contexts. ¹⁴ For these reasons and others, Palliative Care is included in the World Health Organization’s list of “Best Buys” as well as other recommended interventions for the prevention and control of noncommunicable diseases. ¹⁵ Palliative care can also be delivered effectively by nonphysician providers, which is a benefit to global health care systems where such expertise is in short supply.^16,17

Traditionally, efforts to improve access to palliative care in low and middle income countries (LMICs) are focused on educational and training initiatives for health care professionals, which are critical but can take years to scale up to meet need. However, the need for palliative care in Ethiopia is great and requires immediate action. We believe that one type of immediate action is to engage nonprofessional community members, for example by harnessing the existing infrastructure of the Ethiopian iddir. Before1980’s, iddirs were mainly involved in burials and funeral support; however, the pre-anti-retroviral treatments (ART) HIV/AIDs epidemic brought a paradigm shift: when rising HIV case numbers overwhelmed hospitals’ ability to care for patients, sick patients were turned away and sent home to die. Out of necessity, iddirs began providing support to patients and their families and this continues to this day. ¹⁸

Guided by Hospice Ethiopia and stakeholders, with support from the Worldwide Hospice Palliative Care Alliance, we propose a culturally sensitive model of community-based palliative care instantiated with community iddirs. Iddirs can serve as lay community health workers and the delivery mechanism for implementing home and community-based palliative care services, mobilizing community volunteers, and promoting palliative care. Through work in Bangladesh, the Worldwide Hospice Palliative Care Alliance has identified a model to train community volunteers in palliative care. They also recently launched a pilot project of compassionate community home-based palliative care through training iddirs, the results of which will be critical to informing next steps. ¹⁹ Modern approaches such as mobile health technology may offer a scalable approach that is suitable for improving communication between lay community health workers and medical professionals in urban and rural areas, thereby improving delivery for those who may need it most. The envisioned project would contribute to the evidence of the role of palliative care not only in improving quality of life for patients with incurable disease, but also as a protection mechanism against medical impoverishment and potentially as a poverty reduction strategy in this fragile setting.

Using the Bangladeshi model for training community health workers, we would work with Hospice Ethiopia to adapt this to the Ethiopian context, emphasizing the importance of empowering women in this role, both through a stipend and new leadership role within the iddirs. This project could be effective in creating a sustainable model for home-based palliative care delivery in part due to the emphasis on the local environment: the intervention works within an existing social construct to address a great need within the population. Critical questions that need to be addressed include the nature of training and education of iddirs, the development of cost-effective, sustainable palliative care models, and implementing them nationally to mitigate suffering among Ethiopia’s poorest and most marginalized communities. The Ministry of Health of Ethiopia currently has a plan to expand training to 40,000 non-iddir community health workers by partnering with “Last Mile Health” after a successful pilot project. ²⁰ Our proposed project, with its focus on empowering iddirs in this role, would likely be a good policy and cultural fit. Potential stakeholders could include iddir leaders, a preference for female iddir volunteers, and representatives from all sides of the civil conflict. This project would also provide much needed information on palliative care in humanitarian and conflict zones, which is a historically understudied yet highly relevant topic. This fact was recently recognized by the Sphere Handbook, a comprehensive guide to humanitarian standards, and introduced a section on palliative care for the first time in 2018. ²¹

Finally, and perhaps most importantly, there remains a distinctive need to reframe global health research in the paradigm that health is global, and as such deserves a global, connected agenda based on equal partnerships and lead locally by those on the ground where interventions are aimed to take place, which this proposed project would directly address. We are proud to recognize both the history and new potential role of the modern iddir in improving the quality of life and death of Ethiopians. Shifting the gaze of health research towards local solutions in Ethiopia has the potential to reveal sustainable, effective options for improving access to palliative care and cancer quality—what first appears to be wax is revealed instead to be gold.