Exploring clinical ethics consultation experiences at Uganda Cancer Institute: version 11

Abstract

Background: Globally, healthcare providers (HCPs), hospital administrators, as well as patients and their caretakers are increasingly being confronted with complex moral, social, cultural, ethical and legal dilemmas during clinical care. One consequence is the growth in application of ethical and moral judgements to guide resolution of these ethical dilemmas. Many high-income countries (HICs) utilize formal and informal clinical ethics support services (CESS) to resolve clinical bioethical conflicts. Knowledge gap: There is limited evidence of mechanisms used to resolve complex ethical, socio-cultural and legal issues in most African countries including Uganda. Similarly, the factors influencing ethical consultations and the experiences/perspectives of patients, caretakers and HCPs following or during utilization of these mechanisms are not well studied in Uganda. Aim: To explore clinical ethics consultation experiences at the Uganda Cancer Institute (UCI). Justification: Management of cancer patients is associated with ethical, legal, and social issues inherent to the vulnerability of these patients. Approaches to resolving these issues have not been studied before in Uganda and yet their exploration has potential to contribute to improving the ethical standards in cancer care. Methods: We employed in-depth-interviews (IDIs) and focus group discussions (FGDs) with UCI staff, patients and caretakers at the UCI. Processes of ethics consultation, factors that influenced these processes as well as patient and HCP perspectives of these consultations were discussed. Results: The study revealed utilization of six approaches for resolution of ethical issues and dilemmas: individual consultations, tumor board meetings, morbidity and mortality meetings, core management reviews, disciplinary committees, and clinical departmental meetings. Many patients and their proxies however did not know where to report ethical dilemmas but were willing to utilize CESS if they knew where to find them. Operations of CESS at the UCI were influenced by limited resources, inadequate competence of service providers in clinical ethics and lack of institutional policies and guidelines to support CESS. Discussion: The responsibility of resolving ethical dilemmas by different meeting platforms at the UCI was problematic. This role-overlap created uncertainties among stakeholders regarding what body to seek guidance from when faced with the ethical dilemmas, increasing chances of these ethical conundrums remaining unresolved or unreported. Conclusion: Approaches utilized at the UCI to resolve ethical dilemmas were implicit, with decisions made through different structures without the support of personnel well-grounded in medical/clinical ethics. Recommendations: A need to establish a multidisciplinary clinical ethics committee with members skilled, trained and experienced in medical and clinical ethics was identified.