Advance Care Planning and palliative care for patients with advanced cancer in Uganda

The study sought to identify the extent to which Advance Care Planning (ACP) is practised by palliative care health professionals providing care to patients with advanced cancer and their families in Uganda. A mixed methods study design using qualitative and quantitative methods was used for the assessment. In-depth interviews with a group of nine highly experienced health professionals were conducted using a semi-structured interview guide. Quantitative data were retrieved and analysed from a survey administered to 124 health professionals of whom only 57 (45.9%) responded. The qualitative data were analysed using inductive thematic analysis and descriptive analysis was used for the quantitative data. Of the 57 health professionals who participated in the survey, 87% were aware of ACP and 55% reported regular practice. Fifty-five (55%) percent reported regular provision of ACP for their patients and 46% reported engaging in informal ACP practices. However, 58.5% resp. 37.5% reported that they routinely provide ACP to more than 50% resp. 75% of their patients. A group of nine highly experienced palliative care professionals had a pooled ACP prevalence of only 1.2%. There was a generally good attitude towards ACP with 98.2% acknowledging that patients should be able to determine their future care. However, 32% reported being uncomfortable withholding or withdrawing life sustaining treatment. There are a number of socio-cultural beliefs and barriers, for instance that discussing death and dying is a "taboo", as well as witchcraft, family influence in decision-making, religious beliefs that do not agree with palliative care practices and a preference to use aggressive treatment like chemotherapy for terminally ill, etc. Institutional barriers like lack of a legal framework for ACP, limited time for health professionals to engage in ACP and other patient factors such as denial of diagnosis and collusion to withhold information from patients were reported by 78.2% resp. 84% of the respondents. Despite the good awareness and attitude to ACP, there is a range of barriers that are affecting the implementation of ACP in Uganda. There is need for development of a legal framework for ACP, more research to understand the contextual barriers and develop appropriate education and public sensitisation programs.