Perspectives of patients with advanced cancer on information disclosure during the informed consent process for clinical care at the Uganda Cancer Institute

Abstract

Informed consent is a widely accepted legal, ethical and regulatory requirement in medical care and research, but its practice varies by context and the reality often differs from the theoretical ideals. Disclosure of adequate information and ensuring understanding are key aspects in informed consent that may not be performed with due diligence. Disclosure of adequate information during the informed consent process in many health care units including the UCI may not be given the attention it deserves yet it has great influence on the medical care and end of life decisions made by patients. Objective: To explore the perspectives of patients with advanced cancer about information disclosure during the informed consent process for clinical care at the Uganda Cancer Institute. Methods: The study design was explorative and qualitative in nature. The study population comprised of 24 patients with advanced cancer that were competent to participate in the study and 10 health care providers concerned with information giving to patients including-3 Doctors,3 Nurses,1 counsellor, 1 palliative care specialist, 1 social worker and1 health educator. The data was collected through the in-depth interviews using the key informant interviews guide. Demographic and clinical information on the stage of disease, treatment and prognosis was abstracted from patients’ hospital medical records. Thematic analysis of the data was done using Nvivo 12. Results: Information was disclosed mostly through discussion with the individual patients. Disclosure of information about diagnosis, treatment and prognosis was mostly done by physician or delegated to counselor or palliative care staff. Delayed disclosure of prognosis and benevolent deception were common practices. Verbal consent is mainly obtained for most care procedures. There is a yellow form used at registration to consent patients for care but this is devoid of detail about the procedures to be done and it’s written in English. There were numerous barriers to optimal disclosure of information to patients including lack of time due to high patient load, lack of space and privacy, lack of clear related policy/guidelines, skilled human resource and the poorly designed consent form among others. Participants reported that the information disclosed was inadequate and this hindered their understanding of issues related to their disease and treatment. Most patients indicated that they had never read or signed any consent form; a verbal consent is sought for most care procedures and sometimes they are done without explanation. Several patients had unanswered questions and often got the possible answers from peers who could either scare or encourage or give wrong information. Some of the health care providers were rude or exhibited a poor attitude that hindered free communication. Conclusion: The information disclosed to patients with advanced cancer during the consenting process for clinical was inadequate. Information disclosure during informed consent was highly desired because it enhanced timely implementation of the treatment plan and social decision making. There is need to devise means of improving the informed consent process. Acceptable ways of communicating informed consent to cancer patients need to be developed and staff training on information disclosure skills is paramount