Inequitable Access to Transplants: Adults With Impaired Decision-Making Capacity

Abstract

Inequitable access to deceased donor organs for transplantation has received considerable scrutiny in recent years. Emerging evidence suggests patients with impaired decision-making capacity (IDC) 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 IDC was examined and collated to investigate whether IDC 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 IDC may be inequitable. Consequently, we argue that IDC 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 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 are set out. 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.

Ethics of allocation of donor organs

“…Patients who may benefit from organ transplantation encounter barriers in referral for transplant evaluation [ 32 ]. Patients who are cognitively impaired, frail or suffer from comorbidities, may have smaller chances of being waitlisted [ 35 , 36 ]. Furthermore, there are racial and ethnic disparities in access to transplants, as, for instance, black patients are less likely to be referred for transplant evaluation [ 37 ].…”

Teenager and the transplant: how the case of William Verden highlights action is needed to optimise equitable access to organs for patients with impaired decision-making

“…In light of these matters, Thom et al have provided useful recommendations to assist clinicians and policy makers in their decision making relating to the eligibility of potential transplant who might lack decision-making capacity 12. However, as we develop in the next section, we suggest that current legal and regulatory framework in the UK within which transplant decisions are made presents additional challenges for clinicians.…”

“…Transplantation presents clinicians with complex case-to-case decision making that is dependent on a range of factors. Transplant outcome measures such as medication adherence, graft outcome, patient outcome and quality-of-life are commonly used as indicators to determine transplant eligibility 12. Patients who might lack decision-making capacity are often excluded based on a belief that they are at a heightened risk of poorer outcomes 12.…”

“…Transplant outcome measures such as medication adherence, graft outcome, patient outcome and quality-of-life are commonly used as indicators to determine transplant eligibility 12. Patients who might lack decision-making capacity are often excluded based on a belief that they are at a heightened risk of poorer outcomes 12. For example, it might be argued that a patient who has impaired decision-making capacity would struggle to comply with the post-transplant regimen of taking antirejection medication.…”

“…For example, it might be argued that a patient who has impaired decision-making capacity would struggle to comply with the post-transplant regimen of taking antirejection medication. However, in considering the relationship between mental capacity and transplant outcomes, Thom et al found that there was very limited evidence to support concerns of medical adherence, and very weak evidence of worse patient outcomes and quality of life 12. This is also echoed by Chen et al who claim that there is not an appropriate evidence base to support the use of intellectual disability as a contraindication to receiving an organ transplant 11.…”