Decision making around living and deceased donor kidney transplantation: a qualitative study exploring the importance of expected relationship changes

Due to a shortage of organ donors, kidney transplantation using living donors is increasingly performed in the Netherlands. Quality of life of most living donors is better than or equal to the general population [1, 2] and returns to pre-donation levels after donation [3, 4]. Receiving a living donor kidney has clear advantages in terms of improved graft survival [5], but disadvantages may be psychological, for example that it influences the donor-recipient relationship.

Research regarding the effect of living kidney donation on the donor-recipient relationship has mostly been performed from the donor’s perspective [6‐8]. Although the relationship deteriorated in some cases [9], no changes or an improved relationship are usually reported by donors [6, 7], without any further specification. Thus, it is unknown which aspects of the relationship deteriorated or improved.

The recipient’s perspective has received less attention. Recipients may possibly feel they owe the donor something, hesitate to accept a kidney the donor may need later in life, or are afraid to disappoint the donor if the kidney would not function properly [6, 8]. The recipient is likely to perceive this having an impact on the relationship, without the donor knowing or recognising this effect (so that it is not reported in studies focussing on the donor’s perspective).

Similar cognitions and fears about possible relationship changes may influence the recipient’s decision making when accepting a kidney offer. For example, it is unknown whether deceased donor kidney recipients have deliberately chosen for a deceased donor instead of approaching a living donor. Previous research among kidney patients on the waiting list showed that the most often mentioned first reaction in favour of deceased donor kidney transplantation was the unwillingness to burden a loved one, indicating fear of a decline in the donor’s health status [10]. In addition, psychological problems, particularly feelings of guilt and responsibility towards the donor were mentioned. With respect to relationship changes, this study reported that fear for inequality in the relationship after transplantation was present in many of the answers of kidney patients. However, as these patients were on the waiting list, these answers reflect their attitudes and not the impact of these attitudes on actual choices. More detailed information on the impact of relationship aspects on decision making to pursue living versus deceased donor kidney transplantation is thus lacking.

Purpose of the present study therefore was to explore motivations to donate or accept a living donor kidney or to pursue deceased donor kidney transplantation, and to assess whether expected relationship changes influence decision making and whether such relationship changes are actually experienced.

Of the 114 invited individuals, 60 (53%) consented to join the focus groups and 47 (41%) attended, representative for the total population with respect to age, gender and time since transplantation (Figure 1). The participation rate varied across the three groups between 31% and 50%, but was not significantly different (p = 0.22). Reasons for individuals not consenting were mostly that they did not want to participate in a focus group (n = 25), or could not attend because they were on a holiday during the time the focus groups were held (n = 14). Other reasons were: death of the recipient, feeling sick frequently, too busy or being abroad. Of the 60 individuals who agreed to attend, 13 did not participate of whom 3 cancelled shortly before the focus group due to health reasons. Table 2 shows characteristics of the participants (20 donors, 15 living and 12 deceased donor recipients). The groups did not differ in age, gender or time since transplantation and type of dialysis. As expected, the mean duration of dialysis before transplantation was longer among deceased donor kidney recipients (4 years vs. 0.5 years in living donor kidney recipients) consistent with waiting time estimates (http://​www.​eurotransplant.​nl).

The present study has shown that deceased donor kidney recipients were aware that living donor kidney transplantation was possible. They often had a potential donor available which they refused or did not want. They mostly waited for a deceased donor because of their concern about the donor’s health. They more often expected negative relationship changes than living donor kidney recipients, who also expected positive changes. Living donor kidney recipients mostly accepted the kidney to improve their own quality of life, combined with expected mostly positive relationship changes. Donors mostly donated a kidney because transplantation would make the recipient less dependent and could participate more in family life, thereby improving the donor’s quality of life.

A limitation of our study is that we counted only verbal statements made in the focus groups, without taking into account the nonverbal expressions (e.g., nodding agreement to statements of other participants) [20]. Nevertheless, the quantitative counts of verbal utterances support our impressions from all focus groups. A second limitation is that we asked respondents retrospectively about their motivations and expectations prior to transplantation. Not all donors and recipients may remember their motivations or feelings prior to transplantation exactly, so that recall bias could result in over-representation of strong emotions that are still remembered. Our results may also be biased due to cognitive dissonance: people tend to justify earlier decisions, resulting in other motivations or emotions being reported than in a prospective study. A third limitation concerns the selection of participants. We may have observed the opinions of a selected group willing to participate in our study, e.g. because they had expected or experienced relationship changes. This may overestimate the percentage of persons reporting relationship changes. However, it is unlikely that this selection will have biased the reported specific aspects of the relationship changes or influenced differences between the three groups. Thus, counting responses, as done within this study, gave a good impression of the important key themes. Further research should show whether our results apply to a larger group of donors and recipients. We will translate the most frequently reported relationship changes and motivations to donate or accept a kidney into questions for a questionnaire sent to our entire study population. In this way we will obtain quantitative estimates on what percentage of donors and recipients experienced relationship changes, whether donors and recipients have the same views on these changes, and what may be possible determinants of such relationship changes.

Our study is, to our knowledge, the first that explored which factors influence patients in their decision making regarding living or deceased donor kidney transplantation with both qualitative and quantitative methods. This combination of methods enables us to conclude that certain types of motivations, expectations and fears seem more common than others. At the same time we could show the inter-individual variation in the precise motivation regarding living kidney transplantation. Previous studies showed that the main motivating factors for donors are the stress and anxiety of subjecting ‘a loved one’ to prolonged dialysis therapy and the emotional and physical deterioration associated with long-term dialysis therapy [6, 21]. Binet et al. showed that the donation was based on indirectly gained benefits for themselves through the improvement of the recipient’s condition [22]. This is consistent with our results where donors also reported disease progression and personal benefits as important reasons to offer a kidney. Living donor kidney recipients also mentioned personal benefits as a reason to accept a kidney. However, these motives seemed less important among deceased donor kidney recipients, who waited for a deceased donor kidney motivated by the feeling they would otherwise have an obligation towards the donor. Moreover, they are concerned about the donor's health consistent with the results found by [Waterman et al. 23], which was reported less often by living donor kidney recipients. The present study adds a direct comparison between living and deceased donor kidney recipients. Thus, the motivation behind living kidney transplantation varies not only from one individual to another but also between groups of kidney patients affecting their decision to pursue living or deceased donor kidney transplantation.

Living and deceased donor kidney recipients also differed in their expectations regarding donor-recipient relationship changes. Most previous studies regarding the effect of living kidney donation on the donor-recipient relationship have been performed from the donor’s perspective [7, 8]. Some studies reported no change, while others reported an improved donor-recipient relationship [7, 24‐32]. If a more detailed description of the donor-recipient relationship after transplantation was given, it was often defined as stable or close [24, 26, 28]. The present study includes both perspectives and shows that expected relationship changes differ, which has determined the motivation to donate, accept or refuse a kidney. Living donor kidney recipients expect both negative changes such as a fear of some imbalance in the relationship and positive changes, such as a closer relationship. Deceased donor kidney recipients expected the same negative changes, but did not expect positive changes. Kranenburg et al. also found that kidney patients on the waiting list expected and feared an unequal, disturbed relationship with the donor after transplantation [10], but did not compare expectations or experiences of living versus deceased donor kidney recipients. Our results indicate that fear of donor-recipient relationship changes influences the decision of patients not to pursue living donor kidney transplantation either by refusing an offer or by stating not to want any offer. The present study also shows that negative relationship changes are indeed experienced to some extent, but that positive changes are experienced more often even though not always expected beforehand. These changes are a closer relationship and increased participation of the recipient in family life. It seems important to include this in the information given to future (potential) donors and recipients. About one-third of our participating donors and recipients experienced no change in the relationship after transplantation, especially those who underwent surgery recently. Even though we have to be careful given the small numbers, a potential explanation may be that it takes some time before realizing that something has changed, particularly if the changes are subtle. Given the small numbers, we cannot make any comparisons on specific positive or negative relationship changes that are experienced, but this will be possible in our future questionnaire study.

Surprisingly, we found that deceased donor kidney recipients often had a potential donor available, but that this offer was refused. These recipients chose to wait for a deceased donor kidney, because of their concern for the living donor’s health and expected negative relationship changes without any positive expectations. It is important to identify these kidney patients to address these issues and to take away any unjustified fears. This may be achieved by discussing expectations regarding changes in the relationship and their health status, as an element of standard care. If these issues are only discussed when brought up, things may be left unsaid so that the potential donor or recipient is not aware of these fears or expectations. They should at least feel reassured they can discuss their fears and doubts regarding living donor kidney transplantation; stories of previous recipients may help in this situation, as well as evidence on how many donors or recipients have actually experienced such changes. By making it part of the standard set of questions, it becomes clear that these issues are just as important as questions on medical issues and need to be considered. In this way, they are prepared what might happen after transplantation and are supported in their decision making.

Most previous studies report that only a very small percentage of donors perceived external pressure to donate a kidney, with estimates in the range of 5–10% [30, 32, 33]. The percentage of donors experiencing social pressure, by either family or physicians, seems higher among our participants. However, given the small numbers, we have to be careful in interpreting these estimates given that a single answer may have a considerable influence on the resulting estimate, and the fact that the focus group may have been a selective sample. On the other hand, if it were true it may possibly be explained by the fact that more subtle changes were picked up in the focus groups than in previous questionnaire studies. This is supported by a recent study of Valapour et al. who asked donors to rank the extent of pressure on a 5-point scale and reported that 40% of donors felt some pressure to donate, with only 2% reporting the highest social pressure [34].

Whether these results can be generalized to other centers will probably depend on differences in cultural values, health care policies and waiting list systems. For instance, Martinez-Alarcón et al. have shown that the general attitude towards living versus deceased donor kidney transplantation is different in Spain, where the majority of patients prefers to wait for a deceased donor, most likely explained by the shorter waiting time in Spain compared to the Netherlands [35]. Another explanation may be the reluctance of transplant professionals to offer living kidney donation systematically to all patients even though they have a general positive attitude towards living kidney donation [36]. These issues are likely to influence the extrapolation of our findings to other countries. We do not expect large differences in the attitude of patients within the Netherlands, given for instance the national waiting list, or large differences in the attitude of transplant professionals, so that we expect that our findings can be generalized to other Dutch centers.

In conclusion, fear of donor-recipient relationship changes and concerns about the donor’s health seem more substantial in deceased donor kidney recipients, resulting in a decision to wait for a deceased donor despite having a potential living donor available. Further research is needed to assess whether this concerns a particular group of recipients and whether it is possible to eliminate their fears or take it into account in their decision making. If confirmed, information prior to living donor kidney transplantation should address expectations regarding potential relationship changes.

IBG analyzed data and wrote the first draft of the manuscript; KS guided the focus groups, participated in study design and interpretation of the data; SD, PJMB, AMS and AGB helped with interpretation of the data and writing the manuscript; PJM conceived the study and its design, participated in the statistical analyses and interpretation of the data, and writing the manuscript. All authors have read and approved the final manuscript.

This study was funded by the Dutch Kidney Foundation, program Patient Care.