Advance Care Planning between clinicians and patients on maintenance Hemodialysis at Kenyatta National Hospital, Nairobi County Kenya

Abstract

Background: End-stage kidney disease (ESKD) is a leading global threat to health with incidences and mortality rates higher than most cancers. Much of the symptom burden and the deterioration of functional independence post-initiation of hemodialysis are therapy-related. However, advance care planning (ACP), in most cases, is avoided until the last stages of life when patients' autonomy and free will are diminished. ACP is not done in nearly 50% of patients, and only about 5% of patients who need ACP receive it in Africa. Unlike in cancer patients, it's only sporadically done in hemodialysis patients or, in most cases, not done at all. Thus, it is essential to understand patients’ and clinicians’ perspectives regarding advanced care planning. Aim of the study: To assess knowledge, uptake and preferences on advance care planning of patients on maintenance hemodialysis as well as advance care planning practice of renal clinicians at Kenyatta National hospital (KNH). Methodology: A descriptive cross-sectional mixed methods research design using quantitative and qualitative approach was employed in this study. The study area was KNH renal unit. Ethical approval was sought from KNH-UoN ERC prior to collecting data. A structured interviewer administered questionnaire used to collect quantitative data from 99 patients on their knowledge, preferences and uptake of ACP. Using interview guide, qualitative data regarding practice of ACP was obtained from two key informant interviews, who were clinicians. Quantitative data was analyzed using statistical package for social sciences (SPSS) version 26. Both descriptive and inferential approaches were used to examine distribution of variables. Continuous data was analyzed using mean (SD) and median (Interquartile Range). Categorical data was analyzed using frequencies (n) and percentages (%). Results were presented using of tables, charts, and graphs. A Chi-square test for the association was used to determine the association between patient characteristics and ACP uptake. The rejection level was determined at a 0.05 level of significance. Content analysis was used to analyze qualitative data. Audio-recorded files were transcribed and manually analyzed to develop patterns and themes based on presence of key words across the two transcripts. Results: Slightly more than half (58.6%) of patients were male, the average was 44 years. 36.4% of the respondents heard of ACP while 11.1% had been educated on ACP. 52% had not heard of a living will while 58.8% thought that their doctors could overrule their living will. 7% had ACP discussions while 86.9% had specific preferences regarding their care yet they had not had such discussions. 79% were willing to have ACP discussions. None of the respondents had documented a surrogate decision maker or a living will. 92% and 90.9% were willing to have living wills and surrogate decision makers respectively. Regarding end of life care, 46.5% and 26.3% preferred hospital care and home respectively as their place of death. There was significant association between uptake of ACP and knowledge on ACP (p=0.001), marital status (p=0.026) as well as preferences at end of life (p=0.049). On clinicians’ practice of ACP, clinicians confirmed that patients’ knowledge of ACP was limited and that their practice of ACP was low. They attributed this to patients coming in very late, uncertainty of estimating life expectancy as well as fear that ACP could have negative psychological effects on their clients Conclusion: The study indicated that there was limited patients’ knowledge and uptake of ACP. Clinicians’ practice of ACP was similarly low. However, majority of patients expressed willingness to engage in ACP. Recommendations: The findings underscore the need for clinicians to put more effort to create awareness of ACP among patients on maintenance hemodialysis. The management of KHN also needs to organize constant trainings for, clinicians on initiation of ACP discussions and ACP implementation. Lastly there’s need for KNH management to develop policies to guide ACP practice as well as to include ACP as one of the services in the KNH renal services charter.