Manipulation of the Waitlist Priority of the Organ Allocation System through the Escalation of Medical Therapies Ethics Committee

What problem will the resource address? Recent reports describe manipulation of waitlist priority May violate equity principle and lead to inequitable organ allocation system No OPTN/UNOS guidance or formal position statement UNOS has received feedback about how waitlist priority could be manipulated using unnecessary medical interventions. For example, public comment responses for the Proposal to Modify the Adult Heart Allocation System (2016) included concerns about manipulating waitlist priority by using cardiac assist devices. There have been recent reports describing the manipulation of waitlist priority in the medical literature and the lay press. A recent news report on National Public Radio (NPR) raised concerns about heart transplant providers escalating medical care when there was no medical reason for the treatment. The NPR report explained that providers often justify this practice by claiming they are acting in the best interest of his or her patient, and suggested when "gaming” the system goes from being an aberration to a standard strategy — then dishonesty becomes the norm. Manipulating the waitlist may violate principle of equity and lead to an inequitable organ allocation system. To date, OPTN/UNOS have not offered guidance or established a formal position statement on this issue.

What does this resource address? Defines and provides an ethical analysis of manipulation of waitlist priority through the use of unnecessary medical interventions Guidance for transplant providers Offers model for ethical clinical practice Clarifies safeguard in transplant system This white paper presents an ethical analysis of escalating care for the purposes of increasing waitlist priority, and could serve as guidance for transplant providers who may be confronted with this issue. This white paper offers transplant providers a model of how to engage in ethical clinical practice, and it clarifies safeguards within the transplant system designed to protect justice and utility in organ allocation. Of note, representatives from the Liver and Thoracic Committee were involved in the development and review of this white paper. Six Committees (Liver, Thoracic, Kidney, Transplant Administrator, Transplant Coordinators and the Operation Safety Committee) were asked to review this white paper and to provide pre-public comment feedback.  

What does this resource address? Defines and analyzes one type of waitlist manipulation - Medical interventions that are not medically required Providers may do whatever possible to help candidate receive a transplant Widespread so all feel compelled to similarly manipulate Candidates may ask for medical interventions to increase their chance of receiving a transplant This white paper limits its focus to practices or interventions that are not medically required, but are initiated, maintained, or escalated for the sole purpose of increasing a candidate’s waitlist priority. The paper does not addresses egregious waitlist manipulation that is clearly inconsistent with federal laws, regulations and OPTN/UNOS policies. This includes accepting financial bribes for access to transplantation, or falsely reporting patient information in order to increase the disease severity to gain additional priority for a patient. Many in the transplant community perceive that manipulation of waitlist priority is widespread, and recognize that physicians may feel compelled to similarly manipulate the waitlist priority system so that their patients are not disadvantaged as a result of the practices of others. In some cases transplant candidates may ask for unnecessary medical interventions to raise their priority on the waitlist.  

What does this resource address? Provides an ethical analysis and examines potential harms of waitlist manipulation Providers have multiple obligations: Uphold fiduciary duty to their patient Be a steward of organs in the allocation system Support the principles of justice and utility Adhere to systemic safeguards that mitigate manipulation The paper examines the ethical principles of utility, autonomy and justice and examines potential harms at the physician/provider level and at a systems level. This white paper examines physicians’ multiple obligations, including fiduciary obligations to their own patients and obligations of stewardship of organs in the OPTN allocation system. This white paper addresses physicians’ ethical obligations to uphold principles of justice and utility that are integral to the transplant allocation system, and adhere to systemic safeguards that mitigate the manipulation of waitlist priority.

What does this resource address? Reviews examples of manipulation of waitlist priority through escalation of medical care Describes unintended consequences of manipulation Recommends ways to mitigate manipulation Calls for OPTN/UNOS and the transplant community to ensure providers understand expectations for upholding the principles of organ allocation The white paper reviews some examples of how physicians can manipulate waitlist priority through the use of unnecessary medical therapies and highlights the components of the various organ allocation systems that may be at risk for manipulation. Understanding how manipulation of waitlist priority can occur and its unintended consequences are important for raising awareness of this issue, modeling ethical clinical practice, upholding the ethical principles of allocation of human organs, and further developing safeguards to prevent this practice from occurring in the future. It is incumbent upon OPTN/UNOS and the transplant community to ensure that providers understand expectations for upholding the principles of organ allocation.

What this resource does not address? No proposed new enforcement, monitoring, or policing of therapeutic interventions No dictation of how clinicians provide care to their patients No suggested indications for using therapeutic interventions This white paper is not intended to propose new enforcement, monitoring, or policing of any transplant center’s use of therapeutic interventions. This white paper is also not intended to dictate how clinicians should provide care to their patients, or to suggest the indications for using specific therapeutic interventions. Any such changes would be outside the purview of the Ethics Committee. Any potential new enforcement, monitoring or policing of therapeutic interventions would need to be considered and proposed by other stakeholders. Rather, this white paper presents an ethical analysis of manipulating waitlist priority through the use of unnecessary medical interventions, and could serve as guidance for transplant providers who may be confronted with this issue. This white paper offers transplant providers a model of how to engage in ethical clinical practice, and it clarifies safeguards within the transplant system designed to protect justice and utility in organ allocation

How will the OPTN implement this resource? June 2018: Anticipated Board of Directors review date If approved, resource will be posted to the OPTN website: https://optn.transplant.hrsa.gov/resources/ethics No member action required Members may use resource voluntarily

Questions? Elisa Gordon, PhD, MPH Committee Chair E-Gordon@northwestern.edu Lee Bolton Committee Liaison Lee.Bolton@unos.org