Introduction

Living donors accounted for almost 15% of organ donation in the United States in 2020 [1]. However, growth of the organ transplant waiting list continues to outpace the limited supply of organ donors, and more than 106,000 people remain on the waiting list for lifesaving organ transplantation including but not limited to kidney, liver, pancreas, heart and lung in the United States [2]. Anonymous live organ donors or unspecified donors are individuals who are willing to be organ donors for any potential transplant recipient with whom they have no biological or antecedent emotional relationship [3]. Although the number of transplants carried out using these donors remains relatively small, an upward trend has been observed in recent years which can potentially help mitigate the shortage of liver and kidney grafts globally [4, 5]. In addition, unspecified donations can help bridge transplant disparities [6] and improve the equity of graft allocation by increasing opportunities for waitlist candidates who lack willing donors, including women, racial minorities and those who are financially disadvantaged.

Despite excellent recipient outcomes [7, 8] and the willingness of this unique group of healthy individuals to expose themselves to health risks to offer patients the chance of life, inclusion of unspecified donors in transplantation programs remain controversial with only a limited number of centres that accept non-directed donations [4]. The reluctance to accept unspecified living donors likely results from multiple sources, including unresolved ethical concerns, legal barriers, providers’ scepticism of donors’ motivations, the logistical complexity in developing and maintaining anonymous live organ donor programs, as well as concerns regarding regulatory ramifications and potential for commercialization [9, 10]. The limited literature available report quantitative data on the characteristics and outcomes of unspecified donors and have demonstrated comparable quality of life and psychosocial benefits among this group of living donors [11–14]. Nevertheless, the lack of in-depth understanding of the profile, motivations, and experiences of unspecified donors continues to hinder the expansion of anonymous living organ donor programs across transplant centres. Qualitative studies are better able to capture broader narratives which can uncover the complex interplay of influences on donors’ decision-making process. Rich narrative data may also provide deeper insights into the challenges that donors face to address existing gaps in care. Thus, this study aimed to conduct a thematic synthesis of qualitative studies to shed light on the beliefs and experiences of unspecified living kidney and liver donors to help increase acceptance in the transplant community and inform the development of relevant programs and guidelines.

Materials and methods

Results

Summary of included studies

The search strategy yielded a total of 3,300 articles from the electronic databases after the removal of duplicates. A title and abstract sieve was conducted and 76 articles were selected for a full-text review. Of these, a total of 12 articles were included (Fig 1). Studies were conducted in the United Kingdom [20–22], the United States [23–25], Canada [26–28], New Zealand [29], the Netherlands [30], and Sweden [31]. In total, there were 163 unspecified living kidney donors and 26 living liver donors, of whom 129 kidney donors and all 26 liver donors completed donation at time of study. The articles were published between 2010 to 2021 and data were largely collected using semi-structured interviews and focus groups. The study characteristics and quality assessment are summarized in S1 and S2 Tables respectively. The quality of the included studies was largely of no concern (n = 6) or of minor concern (n = 6). Four main themes emerged from the thematic analysis of the included articles. These were (1) motivations, (2) perception of risks, (3) donor support, and (4) benefits of donation. Supporting quotes for individual themes and subthemes can be found in the results section.

Download:

• PPT
  PowerPoint slide
• PNG
  larger image
• TIFF
  original image

Fig 1. PRISMA flowchart of included articles.

https://doi.org/10.1371/journal.pone.0277792.g001

Discussion

Globally, there is a severe shortage of deceased donor organs, resulting in high mortality rates on liver and kidney transplant waiting lists ranging from 5–25% in Europe and North America [33–35]. Unspecified donations have become an important source to increase the donor pool and is a growing trend, making up 5% and 9% of living kidney and liver donations in the United States in 2018 and 2019 respectively [4, 5]. However, many transplant centres still do not accept unspecified living donors, and controversy continues to surround the unconditional act of gifting one’s organs to an unrelated recipient [9]. The present analysis thus provides insights into the first-hand experiences, motivations, and challenges that unspecified donors face (Fig 2) by synthesising primary qualitative evidence. This will serve to inform the current debate on unspecified organ donation and facilitate the development of future donor programs and refinement of those already in place.

Download:

• PPT
  PowerPoint slide
• PNG
  larger image
• TIFF
  original image

Fig 2. Thematic scheme.

https://doi.org/10.1371/journal.pone.0277792.g002

Most unspecified donors believed that donation would result in minimal harm to their health and were willing to accommodate these risks in favour of benefits for the recipient. These beliefs and actions were motivated by donors’ personal experiences with acts of benevolence, their core value of altruism, and a deep sense of social responsibility and compassion. This was consistent across both living kidney and liver donors. A previous qualitative review similarly demonstrated that living donors were driven by a sense of duty irrespective of the organ donated and medical discrepancies regarding procedures and risks between kidney and liver donation did not affect decision to donate [36]. However, there remains a paucity of data regarding long-term donor outcomes, and current studies have largely been limited by short follow-up durations, high loss to follow-up, and inadequate sample size [26, 37]. A recent study by Choi et al. found that living liver donors had twice the all-cause mortality of matched healthy controls despite there being few deaths [38]. Living kidney donation has also been reported to increase the risks of end-stage renal disease, decreased kidney function, hypertension, and proteinuria [39]. Long-term prospective studies on living donor outcomes are therefore urgently warranted to enable more informed decision-making [40]. Of note, ongoing efforts are being undertaken to address this gap in literature by teams in the United Kingdom [41].

The discourse of participants revealed a lack of awareness regarding the potential adverse effects of organ donation on psychological wellbeing. While our findings showed that many participants gained positive emotional benefits from the donation experience, previous studies have reported devastating effects of recipients’ death on donors’ psychological wellbeing, albeit the lack of biological relationship. A substantial increase in depression risk of 123% was reported among unrelated (non-spousal and non-biologically related) donors whose recipients died [42]. Most unspecified donors under-anticipated potential health burdens, highlighting the need for better information transmission and education on the uncertainty surrounding donor safety. These findings further emphasize the importance of careful psychosocial evaluation to assess resilience, mental stability and stress threshold of donors [43–45] and the need to adequately prepare donors for the possibility for graft failure. Currently, the Organ Procurement and Transplantation Network (OPTN) policy requires transplant centres in the United States to follow up with living donors for 2 years with mandated reporting every 6 months(3). Besides proposals of wellbeing programs for living donors [46, 47], further recommendations have been made for unspecified donors to be followed by the transplant community in a formalized registry. One such model is the Living Donor Collective Pilot Registry which currently enrols 6 liver and 10 kidney transplantation programs in the United States [48].

One of the major barriers that unspecified donors faced was opposition and negative judgement from family and friends. While previous studies have emphasized the importance of social relationships in unspecified donation [20], the lack of perceived social support may not be a contraindication as most donors were motivated by genuine altruism and possessed a strong sense of autonomy and determination. Instead, the transplant team should encourage donors to discuss intention to donate with family early on to flag out potential concerns that may prove decisive. In addition, the medical team should consider linking up potential donors with those who have successfully completed donation to provide additional emotional support. Likewise, participants reported negative attitudes among some medical professionals towards unspecified donors. This may arise from reservations held by healthcare workers in view of subjecting fit and healthy people to health risks through live organ donation, which differentiates unspecified donors from other surgical patients. Moreover, unspecified donors may also encounter negative attitudes from healthcare workers more frequently than biologically-related donors as support from the public and various groups of health-care workers for living-unrelated donors has been shown to be significantly lower than living-related donors [49–51]. This points to the need for standardized training programs for transplant staff to improve communication skills and address subconscious prejudices [52]. Better communication with donors is required to justify the rigorous work-up process that is necessary to prevent harm to unspecified donors, although this may sometimes be perceived as onerous.

An important implication of unspecified organ donation is the potential to initiate ‘donor chains’ where incompatible donor-recipient pairs can be circumvented, maximizing the capabilities and efficiency of living donor programs [53–55]. This was raised by some participants as a meaningful way to extend their impact and indicates the importance of eliciting donors’ perspectives and willingness to participate. Given that media appeals and awareness campaigns were shown to play a key role in participants’ decision-making, additional publicity and upfront education of all donor options including ‘donor chains’ may reach out to more potential donors [56] while minimizing future pressures in the event of incompatible matches. Interest in this field has driven the development of a formalized liver paired exchange pilot program in the United States under the United Network for Organ Sharing [57, 58].

Our study also revealed gaps in care for potential donors who did not complete donation process due to ineligibility to donate. For instance, potential donors were mentally unprepared to face the possibility that the work-up process may unveil a previously unknown medical condition as donors largely perceived themselves to be in good health. Similarly, healthcare providers were not well-equipped to follow-up with potential donors who received new medical diagnoses and failed to provide quality care for unsuccessful donor candidates. This often resulted in negative feelings such as disappointment or anger when candidates were unable to go through with the donation. Better communication from the transplant team is needed to adequately prepare potential donors for such an outcome and to ensure that potential donors understand and willingly undertake the risks of uncovering health issues during the work-up process. Follow-up protocols should also be established to ensure that potential donors receive appropriate medical care and gain a sense of closure. Importantly, our findings emphasize the importance of extending empathy and acknowledging the experiences of this group of potential unspecified donors who are often neglected.

Conclusion

Living donors will become increasingly relevant in the global transplant community as we head into the next decade. This study showed that many unspecified donors possessed genuine compassion, benefitted emotionally from the experience, and donated without regret. Nevertheless, more safeguards and policies need to be put in place to ensure donor safety and facilitate informed decision-making. Through global collaborations and continued effort to craft donor-centric programs, unspecified living donations may represent the next frontier in helping bridge the gap between organ scarcity and expanding waiting lists.

Supporting information

Acknowledgments

All authors have made substantial contributions to all of the following: (1) the conception and design of the study, or acquisition of data, or analysis and interpretation of data, (2) drafting the article or revising it critically for important intellectual content, (3) final approval of the version to be submitted. No writing assistance was obtained in the preparation of the manuscript. The manuscript, including related data, figures and tables has not been previously published and that the manuscript is not under consideration elsewhere.