Patient Preference and Adherence (Aug 2022)
How Should Deceased Donor Organs Be Allocated? The Patient’s Perspective Derived from Semi-Structured Interviews
Abstract
Tim Bartling,1,2 Carina Oedingen,1,2 Thomas Kohlmann,3 Harald Schrem,2,4,5 Christian Krauth1,2 1Institute of Epidemiology, Social Medicine and Health Systems Research, Hannover Medical School, Hannover, Germany; 2Center for Health Economics Research Hannover (CHERH), Hannover, Germany; 3Department for Methods of Community Medicine, Institute for Community Medicine, University of Greifswald, Greifswald, Germany; 4Transplant Center Graz, Medical University Graz, Graz, Austria; 5General, Visceral and Transplant Surgery, Medical University Graz, Graz, AustriaCorrespondence: Tim Bartling, Institute of Epidemiology, Social Medicine and Health Systems Research, Hannover Medical School, Carl-Neuberg-Str. 1, Hannover, 30625, Germany, Tel +49 511 532 9462, Fax +49 511 532 5376, Email [email protected]: The gap between the supply and demand for deceased donor organs is increasing worldwide, while patients on waiting lists for organ transplantation die. This situation requires ethical donor organ allocation rules. The patients’ perspective on donor organ allocation rules offers a highly relevant and unique perspective that may differ from the perspectives of physicians and the general public.Patients and Methods: Semi-structured telephone interviews were conducted with the regional group coordinators of the federal self-help organization for organ transplanted patients and their relatives in Germany in early 2021. Twelve interviews were conducted with patients and relatives of transplantation patients who received transplants for the affected organs including the lungs, heart, kidney, and liver. Transcripts were analyzed using the deductive framework method which was based on an earlier study. All criteria were reported following the COREQ statement.Results: Participants emphasized aspects of “medical urgency” and “effectiveness/benefit” of transplantation and associated trade-offs as well as the recipient’s responsibility for organ failure (“own fault”), the appreciation for the gifted graft and the patient’s capability of taking care of it (“appreciation/responsibility”). Patients acknowledged that urgent patients should be prioritized and they showed a clear preference toward allocation rules that strive to maximize both the life years and quality of life gained by transplantation.Conclusion: The patients’ perspective is unique in that patients agree on certain rules for allocation and share many preferences, but also have a hard time finding clear cutoff points when considering selecting a participant for allocation. Patient representatives should therefore be consulted in the debate on donor organ allocation rules.Keywords: organ transplantation, organ allocation, scarce medical resources, distributive justice, qualitative research
