Caring for Life-Limiting Illness in Ethiopia: A Mixed-Methods Assessment of Outpatient Palliative Care Needs

J Palliat Med. 2018 May;21(5):622-630. doi: 10.1089/jpm.2017.0419. Epub 2018 Feb 9.

Abstract

Background: Palliative care aims to reduce physical suffering and the emotional, spiritual, and psychosocial distress of life-limiting illness. Palliative care is a human right, yet there are vast disparities in its provision: of the 40 million people globally in need of palliative care, less than 10% receive it, largely in high-income countries. There is a particular paucity of data on palliative care needs across the spectrum of incurable disease in Ethiopia.

Objectives: The aims of this research were to assess the overall burden of life-limiting illness, the costs associated with life-limiting illness, and barriers to accessing palliative care in Ethiopia.

Design: Mixed-methods case-series.

Setting/subjects: One hundred adults (mean age: 43.7 ± 14 years, 64% female) were recruited at three outpatient clinics (oncology, HIV, noncommunicable disease) and hospice patient homes in Ethiopia.

Measurements: Four internationally validated questionnaires were used to assess physical symptoms, psychosocial distress, and disability. In-depth interviews gauged poverty level, costs of care, and end-of-life preferences. Qualitative data were analyzed by thematic content, quantitative data by standard descriptive, frequency and regression analyses.

Results: In oncology, 95.5% of the population endorsed moderate or severe pain, while 24% were not prescribed analgesia. Importantly, 80% of the noncommunicable disease population reported moderate or severe pain. The mean psychosocial distress score was 6.4/10. Severe disability was reported in 26% of the population, with mobility most affected. Statistically significant relationships were found between pain and costs, and pain and lack of well-being. Very high costs were reported by oncology patients. Oncology withstanding, the majority of subjects wished to die at home. Oncology patients cited pain control as the top reason they preferred a hospital death.

Conclusion: There are extensive unmet palliative care needs in Ethiopia. Untreated pain and high costs of illness are the major contributors to psychosocial distress and financial crisis in this Ethiopian population.

Keywords: global palliative care; low-resource setting; primary palliative care.

MeSH terms

  • Adult
  • Aged
  • Ambulatory Care / economics*
  • Ambulatory Care / statistics & numerical data
  • Chronic Disease / economics*
  • Chronic Disease / epidemiology*
  • Ethiopia
  • Female
  • Humans
  • Male
  • Middle Aged
  • Outpatients / statistics & numerical data*
  • Palliative Care / economics*
  • Palliative Care / statistics & numerical data
  • Qualitative Research
  • Surveys and Questionnaires
  • Terminal Care / economics*
  • Terminal Care / statistics & numerical data