Palliative care needs and barriers in an urban Ugandan Emergency Department: A mixed-methods survey of emergency healthcare workers and patients

Abstract

Background: Palliative Care offers patient-centered, symptom-focused relief for patients with incurable disease, and early integration of palliative care ensures quality of life and death while reducing medical impoverishment. The Emergency Department is an ideal yet understudied, under-utilized location to initiate palliative care. Objective: To evaluate the palliative care needs of patients with incurable disease and perceived barriers amongst healthcare providers in the Emergency Department of Kiruddu National Referral Hospital, Kampala, Uganda. Methods: A mixed methods survey of Emergency Department healthcare workers and patients was conducted. A crosse sectional survey of ninety-nine patients was conducted using the integrated Palliative Care Outcome Scale (IPOS). Eleven interviews were conducted with healthcare workers at Kiruddu Hospital, identified by purposive sampling. Descriptive and inferential statistics were used to analyze quantitative data.. Grounded theory approach was used to construct the in depth interview questions, code and analyze qualitative results and collapse these results into final themes. Results: The most common diagnoses were HIV/HIV-TB (32 %), heart disease (18 %), and sickle cell disease (14 %). The prevalence of unmet palliative care needs was substantial: more that 70 % of patients reported untreated symptoms e.g., pain, fatigue, difficulty breathing. Seventy-seven percent of the population reported severe or overwhelming pain. The main barriers to provision of palliative care in the Emergency Department as identified by healthcare workers were: (1) lack of adequate training in palliative care; (2) Challenges due to patient volume and understaffing; (3) the misconception that palliative care is associated with pain management alone; (4) Financial constraints as the greatest challenge faced by patients with incurable disease. Conclusions: We report a high prevalence of unmet palliative care needs among patients in this urban Ugandan Emergency Department, and important barriers reported by emergency healthcare providers. Identification of these barriers offers opportunities to overcome them including harnessing novel mHealth interventions such as clinical support apps or telehealth palliative care consultants. Integration of palliative care in this setting would improve the care of vulnerable patients, provide healthcare workers with an additional care modality while likely adding value to the health system.

Keywords

• Palliative care
• Emergency department
• Uganda