Biliary atresia in Uganda: Current ethical challenges and advancement of public policy.

Publisher: Springer International Country of Publication: United States NLM ID: 7704052 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1432-2323 (Electronic) Linking ISSN: 03642313 NLM ISO Abbreviation: World J Surg Subsets: MEDLINE

Original Publication: New York, Springer International.

Biliary Atresia*/diagnosis ; Biliary Atresia*/economics ; Biliary Atresia*/surgery ; Liver Transplantation*/economics ; Liver Transplantation*/ethics; Humans ; Infant, Newborn ; Developing Countries ; Health Services Accessibility/economics ; Health Services Accessibility/ethics ; Physician-Patient Relations/ethics ; Portoenterostomy, Hepatic/economics ; Portoenterostomy, Hepatic/ethics ; Public Policy ; Uganda

Biliary atresia is a progressive cholangiopathy in neonates, which often results in liver failure. In high-income countries, initial treatment requires prompt diagnosis followed by Kasai portoenterostomy. For those with a late diagnosis, or those in whom Kasai portoenterostomy fails, liver transplantation is the only lifesaving treatment. Unfortunately, in low- and middle-income countries, timely diagnosis is a challenge and liver transplantation is rarely accessible. Here, we discuss the ethical dilemmas surrounding treatment of babies with biliary atresia in Uganda. Issues that require careful consideration include: risk of catastrophic health expenditure to families, ethical dilemmas of transplant tourism, medical risks of maintaining the transplant in a low-resourced health system, and difficult decisions encountered by the surgeon caring for these patients. Four distinct models of the patient-physician relationship are applied to biliary atresia in Uganda. These models describe differences in patient and physician roles, and patient values and autonomy. Solid organ transplantation is a rapidly evolving segment of healthcare in Uganda and ongoing policy advancements may shift ethical considerations in the future.
(© 2024 International Society of Surgery/Société Internationale de Chirurgie (ISS/SIC).)

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Keywords: biliary atresia; bioethics; global surgery; transplant tourism

Date Created: 20240401 Date Completed: 20241015 Latest Revision: 20241101

20241101

10.1002/wjs.12166

38557980