Illness Understanding and End-of-Life Care Communication and Preferences for Patients With Advanced Cancer in South Africa

Abstract

PurposeThe 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 MethodsData 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.ResultsOnly 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.ConclusionSouth 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.

A Prospective Cohort Study of Factors Associated With Place of Death Among Patients With Late-Stage Cancer in Southern Africa

“…A previous study from our center reported that most patients (76.9%) would not want to know how long they had to live even if their doctors knew. 26 This finding highlights a further challenge to effective and appropriate communication about end-of-life preferences between health care providers, patients, and their families and may also affect illness understanding. Inadequate communication and subsequent inappropriate expectations could add to the emotional and physical burden on caregivers trying to cope with limited resources and result in hospitalization of the patient.…”

Knowledge, attitude and self-efficacy towards palliative care among nurses in Mongolia: A cross-sectional descriptive study

“…However, results from previous studies, the majority of which were conducted in developed countries, have limited applicability in LMICS [20,21]. There are no published studies evaluating the knowledge, attitude, or self-efficacy towards palliative care among Mongolian nurses, and little is known regarding their level of preparedness to deliver palliative care.…”

Health system experiences of breast cancer survivors in urban South Africa

“…One study found only 1 in 50 Black South African women with breast cancer reported that their provider had talked to them about their prognosis. 16 Living with breast cancer often causes women varied physical, emotional, and psychological challenges due to enduring treatment, with some describing treatment as highly traumatizing and a period of severe emotional suffering. 3,17 Total mastectomy remains the most common surgical treatment today in South African public health services, despite breast conserving surgery being the surgical treatment of choice in high-resource settings.…”

“…One study found only 1 in 50 Black South African women with breast cancer reported that their provider had talked to them about their prognosis. 16 …”