Carrie Thiessen

Development of a Donor‐Centered Approach to Risk Assessment: Rebalancing Nonmaleficence and Autonomy

Living kidney donors are often excluded from the shared decision making and patient‐centered models that are advocated in medical practice. Thresholds for acceptable risk vary between transplant centers, and between clinicians and donors. Although donor selection committees commonly focus on medical risks, potential donors also consider nonmedical risks and burdens, which may alter their assessment of an acceptable level of medical risk. Thus, transplant centers may encounter ethical tensions between nonmaleficence and respect for donor autonomy. A donor‐centered model of risk assessment and risk reconciliation would integrate the donors values and preferences in a shared decision about their eligibility to donate. This paper argues for shifting to a donor‐centered model of risk assessment, and presents a research agenda to facilitate the greater participation of donors in their own evaluation and approval processes.

Opting out: confidentiality and availability of an ‘alibi’ for potential living kidney donors in the USA

Ethicists and guidelines have suggested that potential living kidney donors who withdraw from evaluation be offered an ‘alibi.’ We sought to determine what potential living kidney donors are told about their ability to opt out, alibi availability and postwithdrawal confidentiality. We reviewed 148 consent forms for living kidney donor evaluation from US transplant centres that performed >5 living kidney transplants in 2010–2011 (response rate 87%). We found that while 98% of centres used evaluation consent forms that indicated that the donor could withdraw, only 21% of these documents offered an alibi. Another 23% of centres’ consent forms indicated that the transplant team would be willing to inform the intended recipient that an individual was not a potential donor. Relatively few consent documents explicitly addressed the confidentiality of the donors health information (31%), candidacy status (18%), decision (24%) or reasons (23%) following withdrawal. To preserve potential donors’ autonomy and relationships, we advocate that all transplant centres offer general alibis in their evaluation consent forms. We conclude by offering recommendations for evaluation consent discussions of opting out, alibis and postwithdrawal confidentiality.

A Call for Research on Individuals Who Opt Out of Living Kidney Donation: Challenges and Opportunities.

Abstract In light of the transplant community’s efforts to increase living donation, preserving donor autonomy is essential. Understanding how often and the reasons why potential living kidney donors opt out of the donor evaluation process for nonmedical reasons is important for assessing donor voluntariness. The experiences of individuals who opt out of donation may reveal avenues for enhancing donor protections and identify modifiable deterrents to donation. A limited number of centers have reported rates of opting out between 0.2% and 22%; the reasons for declining to donate are not well studied. This article calls for further research on potential living donors who opt out of donation. We describe challenges to studying this population and offer a roadmap for an ethical approach to conducting research on individuals who withdraw from living kidney donor evaluation.

Miscommunicating NOTA Can Be Costly to Living Donors.

Misconceptions about whether and how living donors may receive financial support appear to be widespread. These misconceptions may be perpetuated by unclear or incomplete language in informed consent documents. Without accurate written information about the National Organ Transplant Act of 1984 (NOTA) (1), donors may forgo legal financial support and question their decision to donate. The financial burden of evaluation and donation (2) may disproportionately affect vulnerable populations. We recommend that the removal of financial disincentives begin by disclosing explicit and accurate information regarding available mechanisms to defray donors’ costs.

The Long‐Term Follow‐up and Support for Living Organ Donors: A Center‐Based Initiative Founded on Developing a Community of Living Donors

Transplant professionals recognize that the long‐term follow‐up of living organ donors is a priority, yet there has been no implemented solution to this problem. This critical gap is essential, because the transplant field is now emphasizing living donation as a means to address the organ shortage. We detail our living donor initiative, which sets several priorities we recognize as fundamental to persons who have donated organs at our transplant center. This intervention attempts to mitigate the donor and center factors that are known to contribute to the lack of long‐term follow‐up. Beyond that, our goals are aimed at providing ongoing engagement, wellness, clinical data accrual, laboratory follow‐up, and social support for our living donors, in continuity. Our ultimate goal is to nurture the development of local living donor community networks by providing social engagement for current and past donors, which also serves as a platform for greater population education on the societal importance of living donation. This initiative is based on joint recognition by our transplant team and our hospital leadership that supporting the long‐term welfare of living donors is essential to accomplishing the goal of expanding living donor transplantation. The transplant team and hospital missions are aligned, and both contribute resources to the initiative.

Written informed consent for living liver donor evaluation: compliance with Centers for Medicare and Medicaid Services and Organ Procurement and Transplantation Network Guidelines and alibi offers.

We examined written informed consent forms for living liver donor evaluations to determine whether they incorporated elements required by the Centers for Medicare and Medicaid Services (CMS) and suggested by the Organ Procurement and Transplantation Network (OPTN). We contacted each of the 41 US centers that performed at least 1 living donor liver transplant in 2011; 37 centers reported active living donor evaluation programs. Twenty‐six centers shared their consent form for living donor evaluation (response rate = 70%). Each document was double‐coded for consent element content. We found that 57% of the centers included the 9 mandated CMS elements. Although the OPTN guidelines are non‐binding, 78% of the centers used consent forms that addressed at least two‐thirds of the elements recommended by OPTN. Only 17% of the centers provided written offers of an alibi to donors who withdrew from the evaluation. On the basis of our findings, we offer suggestions that may be relevant to ongoing revisions to the OPTN living liver donor consent policy and may help centers to improve the clarity of their written consent forms. Liver Transpl 20:416–424, 2014.

Assessing Living Donor Priorities Through Nominal Group Technique

The need for kidneys for transplantation continues to far surpass the number of donors. Although studies have shown that most people are aware of and support the idea of living donation, it remains unclear what motivates individuals who are aware, knowledgeable, and in support of donation to actually donate, or conversely, what deters them from donating. Utilizing nominal group technique, 30 individuals participated in 4 groups in which they brainstormed factors that would impact willingness to be a living donor and voted on which factors they deemed most important. Responses were analyzed and categorized into themes. Factors that influence the donation decision, from most to least important as rated by participants, were altruism, relationship to recipient, knowledge, personal risk/impact, convenience/access, cost, support, personal benefit, and religion. Participants reported a significant lack of information about donation as well as lack of knowledge about where and how to obtain information that would motivate them to donate or help make the decision to donate. Findings suggest that public campaign efforts seeking to increase rates of living donation should appeal to altruism and increase knowledge about the impact (or lack thereof) of donation on lifestyle factors and future health, and transplant programs should aim to maximize convenience and minimize donor burden. Future research should examine whether tailoring public campaigns to address factors perceived as most salient by potential donors reduces the significant gap in supply of and demand for kidneys.

The Psychosocial Impact of Withdrawing from Living Kidney Donation

Purpose of ReviewWe summarized data on the experience of people who withdraw from living kidney donation for non-medical reasons and suggest transplant centers strategies to enhance support for this population.Recent FindingsReported rates of opting out vary widely, from 0.2 to 22%. Individuals often describe more than one factor that contributed to their decision not to donate. Limited data suggests that most who withdraw from donation do not experience a long-term negative impact on their relationship with their intended recipient. For a minority, however, the decision to opt out may occasionally strain relationships and create significant emotional distress. Non-specific statements of ineligibility to donate may alleviate these complications, but they are rarely used.SummaryThe psychosocial impact of opting out of donation is complex and merits further research.

Outcomes for individuals turned down for living kidney donation: XXXX

A better understanding of the consequences of being turned down for living kidney donation could help transplant professionals to counsel individuals considering donation.

Patient and Graft Survival Among Sexagenarian and Septuagenarian Renal Transplant Recipients and Donors: The Context for Older Recipients

Due to the increasing number of patients with end-stage renal disease, there is a growing demand for transplants for recipients and donors aged 60 years and older. Using data from the Scientific Registry of Transplant Recipients, we performed survival analyses and multivariate logistic regression to help guide transplant professional decisions regarding the selection of graft type (living vs deceased) and donor age (60-69 vs 70+ years) for recipients aged 60 years and older.