Saving and Improving Life
Participants supported living kidney donation as transplantation was expected to confer survival and quality of life benefits for recipients. Living donation would save someone from a “slow death” on dialysis. They believed the risk to the donor was justified by the significant improvements in quality of life for the donor and recipient, particularly in spousal donation.
At a community level, kidney donation would increase the rates of transplantation and thus minimize the substantial costs of dialysis. From this perspective, nondirected anonymous donation and public appeals for living kidney donors were deemed acceptable.
Participants believed donors could gain a sense of fulfillment and reward from doing a “good deed” that benefited both the recipient and the community. Some anticipated that donors might be more motivated to maintain a healthy lifestyle and therefore achieve physical benefits from donating.
Reassurance and Control
Living kidney donation was preferred over deceased donation among some participants who believed they would feel more comfortable in knowing their donor and “what was going inside of them.” They felt unable to be reassured about quality of a kidney from a deceased donor.
Consciousness of Donor Risks
Participants were wary about the risks of death, infection, and surgical complications in donors. They were concerned about the possibility of decreased life expectancy, kidney disease (as the remaining kidney would “work harder”), and development of risk factors in donors. Even if population data were available, the individual risk to the donor remained uncertain. Some felt cautious about the susceptibility of younger donors and remarked on the unhealthy lifestyles prevalent in the current generation. However, others were confident that living with one kidney posed a negligible risk. Some preferred living donation as it would not “interfere” with the grieving process of a family in deceased donation.
Kidney donation was thought to make donors physically vulnerable. Participants believed donors would experience pain that imposed function limitations, or donors would be required to exercise extra vigilance about their health, and might experience social and vocational restrictions including inability to participate in contact sports or strenuous activities, or to join the police force or army. They believed donors would have to control their alcohol consumption and dietary intake.
The financial burden resulting from donors’ taking time off work, medical workup, and accommodation and travel expenses were an important consideration particularly in the middle-aged groups. Some thought donors might suffer career disruption or jeopardize their livelihood, or expected employers might not be supportive. They questioned whether donors would pay increased health insurance premiums.
Participants thought donors might have to deal with disagreement with family members about their decision to donate, and conflict between the donor and recipient after donation would cause regret in donors. Asking for a donor among family and friends could consequently create tension or destroy relationships if the potential donor refused to donate. However, some believed the strong bonds within families as compared with friendships might in some way be emotionally protective for related donors.
Participants believed that recipient death or graft loss would be unbearable for donors. Donors might feel an overwhelming sense of irreversible loss or guilt for not providing a “good” enough kidney. They thought donors might become resentful towards the recipient, reflecting on their decision to donate as a “waste of time”. They surmised that failed expectations and disappointment of transplant failure could cause depression and resentment in donors.
Fear of the Unknown
The general lack of public awareness was thought to explain fear and doubt about living kidney donation. Specifically, the uncertainties about the surgical risks, and future health and lifestyle impact of donation were speculated to cause hesitation among potential donors.
The altruism of living kidney donation was sometimes overshadowed by repulsion towards organ trafficking or suspicion of financial exchange for kidneys. Some were wary of “body farming,” and exploitation of poor and vulnerable people therefore held reservations about donation between strangers. Disclosing the recipient’s identity in nondirected donation was believed to increase the potential for financial exchange.
Some questioned the worthiness of potential recipients in receiving a living donor kidney. They considered whether the cause of the illness was “self-inflicted.” They believed recipients had a responsibility to maintain a healthy lifestyle and to protect their kidney. It would be unfair to expose a donor to the risks of donation if the recipient was “self-destructive” and going to “abuse,” “trash,” or “destroy” the kidney. In nondirected donation, some insisted that the kidney should be allocated to a recipient who would not engage in high-risk behaviors such as smoking, excessive drinking, or nonadherence.
In considering whether they would hypothetically seek or accept a kidney from a living donor, participants were unwilling to pressure others and to be burdened with the guilt of exposing donors to potential harms. They felt it could be “selfish” to ask for or accept such a major sacrifice and would only consider accepting if the donor actively volunteered. Some indicated a preference for deceased donation and would only pursue living kidney donation under desperate circumstances.
Some suggested that donors may regret their decision to donate given the “loss of potential to donate later to someone else” particularly if the donor’s child needed a kidney in the future. Also, they believed that recipients may feel unduly indebted to the donor and wished they had not accepted the kidney.
Equal Access to Transplantation
Public solicitation for directed donation was unacceptable to some participants as they perceived it would generate inequities by allowing individuals, namely the rich and media savvy, to “jump the queue.” However, some expressed empathy for patients who had no potential donors and were desperate for a transplant, and therefore suggested that people should have the right to appeal to the public for a kidney donor particularly if it was their “absolute last option.”
Paired kidney exchange was acceptable on the basis of reciprocity that a donor would receive a near-equal quality kidney for their recipient. They believed in ensuring a “fair trade” for example by preventing donor pairs from withdrawing in the final moments causing another pair to miss out.
Some participants maintained that nondirected donation and paired kidney exchange should remain anonymous to prevent judgment and discrimination against recipients and donors based on their lifestyle, cause of the illness, personality, religion, and ethnicity.
Donor Safety net
Some believed that anxieties about the risks to donors could be partially alleviated if donors received waitlisting priority or financial assistance. However, it was argued that donation was an informed choice and donors should not be deemed more “important” than others, thus creating unwarranted disadvantage for patients already on the waiting list.
Living kidney donation was regarded as a personal decision, and medical professionals should not control people’s choices and “deprive them of free will.” Some felt there were “too many laws about their own body” and donors should be free to choose whom they could donate to as long as it was compatible and they were not being paid for the donation. When donating to a family member, participants believed it was the “emotional choice” of the donor, but others argued that emotions could impede rational decision-making.
Right to Know
In nondirected donation or paired kidney exchange, some participants believed individuals had a “civil right” to choose to know the identity of their recipient or donor, as long as both sides agreed.
Participants believed that the validity of the donor-recipient relationships could not be judged by external parties. They felt it was beyond the “medical practitioner’s role to dissect a friendship when two people present themselves as friends.” Some deemed friendships formed via the Internet could be legitimate.
Assumed Duty of Care
Facilitate Informed Decision-Making
The physician’s primary role was seen to be ensuring that donors had the capacity to make an informed decision, rather than giving permission to donate. Participants trusted that physicians would inform donors about the medical risks, be transparent about the uncertainties, and discuss relevant considerations that might influence the decision to donate including the chance of the recipient receiving a deceased donor kidney, and the health, lifestyle, and socioeconomic impact on donors. Some suggested that donors should be able to demonstrate comprehension of risks, especially the medically borderline and younger donors.
Safeguard Against Coercion
Participants believed physicians should be aware of potential coercion and exploitation, particularly for donors in a power relationship. Physicians were expected to provide an opportunity for donors to clarify their motivations and an excuse out of donation for those who felt coerced, guilty, or threatened. If financial exchange was suspected, especially if the donor-recipient relationship was tenuous, some felt physicians should investigate the donor’s motivations and prevent any unscrupulous “hidden agendas.”
Ensure Psychological Safety
There was an expectation that donors would undergo psychological assessment to ensure they were mentally stable and able to make a well-considered or “rationale” decision. They emphasized the importance of psychological assessment for nondirected donors whose motives could be ambiguous. Participants believed donors should have realistic expectations and be prepared for any disappointments after donation, for example, if the transplant failed. Participants were also concerned about the psychological detriment of not being permitted to donate and unable to “save” their loved one.
Participants felt they could depend on the physician to identify major medical risks and minimize possible complications and harms. Physicians were seen to have the ability to ascertain if there was an unreasonable risk of death or kidney disease that outweighed the potential benefits, and prevent donation from proceeding.
The decision to proceed with donation was presumed to be made by a team of healthcare providers to minimize bias or personal judgment by an individual clinician.
Disclosing information about parentage or medical status to both the donor and recipient was controversial because of the moral and psychological implications. Some believed that discussing misattributed parentage exceeded medical responsibility whereas others believed donors had a right to know to make an informed decision. Some had concerns about protecting patient confidentiality and the psychological ramifications of disclosure on both parties. They also believed it should be disclosed if there were medical issues to consider (e.g., genetic disease). Regarding medical conditions such as infectious diseases, there were disputes between protecting patient confidentiality and the onus on physicians to be transparent with donors about the chances of transplant success.
In the context of organ scarcity, the general public were supportive of living kidney donation as it offered survival and psychosocial benefits for recipients and alleviated the economic burden of dialysis. However, speculation about potential donor harms and lifestyle restrictions, ethical uncertainties, and emotional impact instilled some caution about living kidney donation. These concerns were somewhat allayed by an intrinsic expectation that medical professionals would facilitate informed decision making, recognize and address coercion, minimize physical and psychosocial harms, and conduct objective donor assessments. The general public believed in respecting donor autonomy and the importance of maintaining equity and avoiding discrimination, and providing support or a safety net for donors.
Our findings suggest the community are mainly concerned about the risk to donors, and, as found in previous studies, this is predominantly in relation to the impact on quality of life and potential complications (14). Potential donors, however, tend to be more concerned about recipient survival and well-being (15, 16), and family members considering donation have expressed fear of being deemed ineligible (16, 17). Patients with ESKD anticipate unbearable guilt in recipients should a donor death or complications occur (18). Transplant recipients have expressed anxieties about graft survival and feelings of indebtedness to the donor (19–21). Patients with ESKD and the general community share similar reservations about the burden of asking someone to be a living kidney donor, and the consequential guilt if donors suffered harms or regretted their decision (18, 22–27). As identified by the participants in our study, living kidney donors report depression and a sense of emptiness and loss of strength if the transplant failed (19, 28). The general community reiterated the importance of considering potential financial consequences of donation, particularly with regards lost income and the higher costs incurred if donors faced complications. Research suggests that up to 30% of donors experience lost income as a result of donation, but the total costs incurred by donors remain unknown and conservative estimates range from US$0 to $28,906 (29).
Support for living kidney donation among the general community was somewhat marred by fear of the unknown and troubling narratives about organ trafficking and exploitation. This is perhaps unsurprising as most educational interventions to promote awareness about living kidney donation are targeted at patients with ESKD and their potential donors, not the community (30). The community’s exposure to living kidney donation tends to be dominated by media stories and anecdotes about the horrors of kidney trade in the black market.
The worthiness of potential recipients to receive a living donor kidney was a focal point of contention among the general community, which has also been identified in previous studies (31). They believed that allowing kidney donation to recipients who were likely to lose their graft because of risk-taking behaviors meant that the risks to the donor would be unjustified and unfair. Although in the context of nondirected donation or paired kidney exchange, the community urged to maintain anonymity to prevent possible prejudice.
In deceased donation, the public have expressed distrust in the healthcare system fearing premature organ retrieval and disrespect of the body (32, 33). In contrast, public expectation of transplant professionals to enact duty of care in living kidney donation was made apparent in our study. Preserving public confidence in living kidney donation may require explicit strategies to facilitate informed decision-making, minimize undue coercion, protect psychological well-being, and to conduct objective assessment of donor eligibility. Although these are largely espoused in global guidelines on living kidney donation (34–38), there are still inconsistencies and lack of clarity in how to evaluate and manage perceived coercion, weigh risks in the context of prognostic uncertainty, and ensure informed consent in practice (39). At a broader level, greater visibility of initiatives to prevent organ trafficking such as the Declaration of Istanbul (40) among the community may help to dispel some of the public suspicion towards unethical financial exchanges and coercion.
Our study provides in-depth insight into community beliefs about living kidney donation. We acknowledge the potential selection bias in recruiting participants registered with market research companies; however, the study population included a range of demographic characteristics and saturation was achieved in each age group. Another limitation of the study is that the majority of participants were well educated. Non–English-speaking participants were excluded because of lack of resources for trained research interpreters; therefore, the transferability of this population may be limited. We suggest that this study could be replicated in other populations from different cultural backgrounds or in developing countries where values and norms held are likely to be different.
In deceased donation, the organs are a scarce community held resource and donors and families make decisions in the context of community need (32), whereas living donors must weigh their own medical and psychosocial risks against the benefit for a known individual. This gives rise to unique ethical challenges and complexities in respecting donor autonomy and facilitating informed decisions, while at the same time ensuring “altruistic” motivations, and minimizing donor harms—which were raised in the general community. We suggest that input from all stakeholder groups, including transplant professional, patients, actual and potential donors, and the general community, be sought to inform policy development in living kidney donation.
Few studies have assessed the effect of community-based media or educational interventions on the knowledge, attitudes, and decisions of the general community with regards to living kidney donation. One study found that mass media campaigns on living organ donation, using television and radio advertisements, increased positive living organ donation attitudes and behavioral intentions (9). In deceased donation, public education mass media and online social media campaigns have influenced opinions and decisions about organ donation (10–13), and a recent systematic review suggests that educational interventions with an interpersonal component are effective in increasing donor registration rates (14). It may be timely to consider diverse media technologies to disseminate accurate and balanced information, to improve community understanding about living kidney donation.
Living kidney donor transplantation is contingent on public willingness to donate. However, fear of the unknown, concerns for the donor, and associations with black market organ trading can weaken public support for living kidney donation. We suggest that community input be sought to develop community-based education initiatives on living donation and subsequently evaluated for its effectiveness in increasing community awareness and knowledge. Improving transparency about living kidney donation process and developing interventions, practices, and policies that address community skepticism, concerns, and values may promote awareness and trust in living kidney donation.
MATERIALS AND METHODS
Participants from New South Wales, Victoria, and South Australia were purposively selected from the general public by market research companies to achieve a range of sociodemographic characteristics (age, employment status, education, and ethnicity). Participants were eligible if they were English-speaking and aged 18 years and over. Participants with an immediate or vested interest, that is, who had an immediate family member with ESKD were excluded. To promote rapport, we convened focus groups by age groups (18–30 years, 31–50 years, and 51 years and over). Participants were reimbursed AU$80. The University of Sydney Ethics Committee approved the study.
The interview guide was based on a systematic review (10) and discussion among the research team (SDC, Materials and Methods, http://links.lww.com/TP/A959). The questions focused on knowledge, support, willingness, and beliefs about living kidney donation, with case studies provided as prompts to stimulate conversation and debate. Each participant was given information sheet on kidney disease, dialysis, and transplantation (SDC, Materials and Methods, http://links.lww.com/TP/A959). One investigator (A.T. or A.R.) facilitated 2-hr focus groups and recorded field notes. Focus groups ceased when theoretical saturation was reached. All focus groups were digitally audiotaped and transcribed.
The transcripts were entered into HyperRESEARCH software (version 3.0). Using the principles of grounded theory (41) and thematic analysis, A.T. coded the transcripts into concepts that were identified inductively from the data. New codes were created when necessary. The software was used to generate a report of all codes with the corresponding text. Similar concepts were grouped into themes. Researcher triangulation was conducted by discussing the preliminary themes with A.R., who read the transcripts independently and confirmed that themes reflected the complete spectrum of participants’ views. Patterns and conceptual links among themes were identified and mapped into a thematic schema.
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Living donation; Kidney donation; Community; Qualitative research; Focus groups
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