Inequitable access to transplants: adults with impaired decision-making capacity
Kristof Van Assche1, Rebecca L. Thom2, Anne Dalle-Ave3, Eline M. Bunnik4, Tanja Krones5,6, Alex Ruck Keene7,8, Antonia J. Cronin8,9.
1Faculty of Law, Antwerp University, Antwerp, Belgium; 2King's College Hospital London, London, United Kingdom; 3Ethics Unit, Institute of Humanities in Medicine, University Hospital of Lausanne, Lausanne, Switzerland; 4Department of Medical Ethics, Philosophy and History of Medicine, Erasmus Medical Centre, Rotterdam, Netherlands; 5Department of Clinical Ethics, University Hospital Zurich, Zurich, Switzerland; 6Institute of Biomedical Ethics and History of Medicine, University of Zurich, Zurich, Switzerland; 7739 Essex Chambers, London, United Kingdom; 8King’s College London, London, United Kingdom; 9Guy’s and St. Thomas’ NHS Trust, London, United Kingdom
"Ethical and Legal Issues” working group of the European Society of Transplantation.
In recent years inequitable access to deceased donor organs for transplantation has received considerable scrutiny. Emerging evidence suggests that patients with impaired decision-making capacity face inequitable access to transplantation. The “Ethical and Legal Issues” working group of the European Society of Transplantation undertook an expert consensus process. Literature relating to transplantation in patients with impaired decision-making capacity was examined and collated to investigate whether impaired decision-making capacity is associated with inferior transplant outcomes and the legitimacy of this healthcare inequality was examined. Even though the available evidence of inferior transplant outcomes in these patients is limited, the working group concluded that access to transplantation in patients with impaired decision-making capacity may be inequitable. Consequently, we argue that impaired decision-making capacity should not in and of itself be considered as a barrier to either registration on the transplant waiting list or allocation of an organ. Strategies for non-discrimination should focus on ensuring that eligibility is based upon sound evidence and outcomes without reference to non-medical criteria. Recommendations to support policy makers and healthcare providers to reduce unintended inequity and inadvertent discrimination will be presented. We call upon transplant centres and national bodies to include data on decision-making capacity in routine reporting schedules in order to improve the evidence base upon which organ policy decisions are made going forward.
We thank the European Society for Organ Transplantation for facilitating the consensus process.
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