End-of-Life Palliative Care Practices and Referrals in Uganda

BACKGROUND: While early involvement and integration of palliative care with oncology can positively impact quality of life and survival of patients with advanced cancer, there is a dearth of information regarding this integration in sub-Saharan Africa. OBJECTIVE: We sought to describe the rate and factors predicting specialist palliative referrals among cancer patients in Uganda. DESIGN: We examined the rate of referrals of cancer patients to palliative specialists via a chart review, while also surveying and interviewing doctors at the Uganda Cancer Institute (UCI) about their approaches to palliative care. SETTING: All adult patients at the UCI who died in a 20-month interval from 2014 to 2015. All UCI doctors were approached for the survey and 25 (96%) participated. Seven of these doctors were also individually interviewed. MEASUREMENTS: Number of referrals to palliative specialists and qualitative responses to questions about end-of-life care management. RESULTS: Sixty-six (11.1%) of 595 patients were referred to palliative care specialists. Patients with worse ECOG performance statuses were more likely to be referred to palliative specialists (odds ratio 2.23, p = 0.03); no other factors were predictive of a referral. Median number of days lived after referral was 5 days (interquartile range 2-13). Doctors explained the low referral rate and short life expectancy after referral by limited palliative resources and a reticence to have end-of-life management conversations with patients due to cultural taboos. CONCLUSION: Despite recognized benefits of palliative collaboration, doctors at the UCI seldom refer patients to palliative care specialists due to limited staffing, cultural barriers, and difficult interservice communication.