Illness understanding and end-of-life care communication and preferences for patients with advanced cancer in South Africa

Abstract

Purpose The understanding of patients with cancer of their condition and their wishes regarding care as they approach end of life (EoL) have been studied more in high-income countries than in low- and middle-income countries (LMICs). Patients and Methods Data were analyzed from a cohort study (N = 221) of patients with advanced cancer who were recruited from a palliative care center in Soweto, South Africa (LMIC), between May 2016 and June 2017. Patients were asked about their understanding of their illness, estimated life expectancy, EoL care communication, and EoL care preferences. Results Only 13 patients (5.9%) acknowledged that they were terminally ill; nine patients (4.1%) estimated accurately that they had months, not years, left to live. A total of 216 patients (97.7%) reported that they had not had an EoL care discussion with their physician, and 170 patients (76.9%) did not want to know their prognosis even if the doctor knew it. Most patients preferred comfort care (72.9%; n = 161) to life-extending care (14.0%; n = 31), and did not want to be kept alive using extreme measures (80.5%; n = 178) or have their doctors do everything possible to extend their lives (78.3%; n = 173). Finally, 127 patients (57.5%) preferred to die at home, and 51 (23.1%) preferred to die in the hospital. Most patients (81.0%; n = 179) had funeral plans. Conclusion South African patients demonstrated less awareness of the fact that they were terminally ill, were less likely to have discussed their prognosis with their doctor, and more strongly preferred comfort care to life-extending EoL care than US and other LMIC patients in prior research. These differences highlight the need for culturally appropriate, patient-centered EoL care for South African patients with advanced cancer as well as to determine individual preferences and needs in all EoL settings.