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

Abstract

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. We sought to describe the rate and factors predicting specialist palliative referrals among cancer patients in Uganda. 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. 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. Number of referrals to palliative specialists and qualitative responses to questions about end-of-life care management. 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. 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.