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Becoming a living kidney donor

Lennerling, Annette1 4; Forsberg, Anna2; Nyberg, Gudrun3

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doi: 10.1097/01.TP.0000087832.27092.4F
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Abstract

Although living kidney donation is an established procedure, few studies have dealt with how this is perceived by the donor (1–7). The Sahlgrenska University Hospital has had a living kidney-donor program since 1965, and this is the preferred transplant procedure, now constituting approximately 35% of all kidney transplantations. In the early years, only parents or siblings were accepted, but the criteria for becoming a donor have expanded. As is also practiced in several other centers, more distant relatives and even unrelated persons can become donors (8–10). Thus, cousins, uncles and aunts, spouses, and close friends may now be considered. The health professionals working within this field have a great responsibility in the task of selecting donors. Many follow-up studies have shown that the short- and long-term medical risks involved in live-donor nephrectomy are small (11–14). During the assessment, not only physiologic, but also psychologic and social, factors must be considered (15–18). Ethical and psychosocial concerns may relate to individual autonomy, volunteerism, economy, occupation, psychologic health, and the relationship between family members (1–7). A penetration of the donor’s motives is necessary for the understanding of these complex aspects. There are no previous scientific studies on the subjectively experienced meaning of becoming a live kidney donor. Furthermore, the decision-making process has only been studied by character and in retrospect (4,5,15,16,19). The aim of this study was to investigate the expressed deeper feelings of subjects facing kidney donation and thus to comprehend the motives and the decision-making process. The study was performed as in-depth interviews with 12 presumptive donors.

SUBJECTS AND METHODS

Respondents

A theoretical selection of 12 presumptive donors was chosen to cover the different kinship and the gender relationships, as displayed in Table 1. Each respondent had to understand and speak the Swedish language. Parents with underage children as anticipated recipients were not included. The donor assessment was to be ongoing but not finished; therefore, no decision on acceptance had been made. Twelve such potential donors received a letter. Within a week, they were contacted by telephone to receive their decision about participation in the study. All those who were invited gave their consent and participated. Six of them were males and six females. The median age was 48 (range 28–71) years. The respondents were invited to choose a time and location for the interview. The ethical committee of the Göteborg University approved the study.

T1-23
Table 1:
Relationship of the interviewed potential donor to the recipient

Interviews

The 12 interviews were performed by one investigator (AL) between December 2000 and April 2001. All interviews took place in hospitals except one, which was performed at the respondent’s office. Before the interviews started, the participants were offered a question guide to read, which presented the areas that would be covered. In-depth interviews were then conducted as an open dialogue (20).

The interviews lasted for a median of 30 (range 20–45) minutes. They were performed with a phenomenological attitude. The investigator’s intention was to make the respondents express their experiences and deeper feelings. The phenomenological method, which is a science based on philosophy, focuses on the subjective human experiences and feelings that are integral with the environment (21–24). The researcher’s task is to capture the respondents’ lived experiences and feelings. The central idea was openness, and therefore the questions were not directed (23). The informants were consulted and trusted, and there were no preformed theories (25). The dialogue meandered along the following themes: emotional relationship to the recipient, the decision-making process, fear for hospitalization and pain, worries about short- and long-term risks, concern for the recipient’s prognosis, and family members’ view on the donation. All interviews were tape-recorded and then transcribed verbatim.

Analysis

The text was analyzed by the authors in collaboration using a phenomenological approach. The phenomenological method developed by Karlsson (22) in 1993 was applied. This method includes five steps: (1) reading through the text several times with an open mind, (2) dividing the text into meaning units, (3) transforming each meaning unit into the researcher’s language, (4) synthesizing the transformed meaning units into “situated structures” presented in the form of an organized synopsis for each interview, and (5) condensing the text of all interviews into a general structure. The interpretative element and the transformation in step 4 were guided by the researcher’s (AL) experience as a transplant nurse and living-donor coordinator.

Using this five-step method, different categories of content are identified. The analysis results in theoretical statements that respond to the research question (24). The statements are validated by direct quotations from the interviews (22,24).

RESULTS

Categories

Seven categories of motives were found to lead to the point where donation becomes the only option: (1) a desire to help, (2) increased self-esteem from doing good deeds, (3) identification, (4) a self-benefit from the relative’s improved health, (5) logic, (6) external pressure, and (7) a feeling of moral duty. A model for the impact of these motives on the central meaning of “being the only option” is displayed in Figure 1. The following descriptions with quotations from the interviews illustrate each motive category.

F1-23
Figure 1:
In-depth interviews with 12 potential kidney donors. Seven categories of motives for donation were found. These motives lead to the perception of donation being the only option.

A desire to help.

The majority of the respondents expressed their desire to help. This was a strong motive, often considered to be something natural. Donors simply wanted to help their relatives when they were in need. A close friend to an anticipated recipient said “We have been friends since childhood and then one feels…. That sort of awoke this desire to help.” Another respondent lifted the act of helping to an existential level by saying “I believe that helping each other is the meaning of life.”

Increased self-esteem from doing good deeds.

A few respondents expressed that donation would make them feel like better human beings. One potential donor was upheld by his working colleagues’ admiration. They had told him that they thought this was a great thing to do. He said “It feels great, so to speak, to be able to do such a good deed…to do something sensible.” Another respondent was influenced by having heard that donors often sense a great feeling of satisfaction after the donation and she said “I’ve heard that you often feel much better afterwards, because then you’ve really done something for somebody.”

Identification.

Identification with the anticipated recipient was common, particularly among siblings, but also in others who were close to the recipient in age. A sister expressed this by saying “If you imagine…to be in that situation and nobody says: I can try …that would be awful,” and a brother stated “She would give me a kidney if I needed one.”

Self-benefit from the relative’s improved health.

Self-benefit was expressed only by spouses. They assumed that the donation would increase their joint quality of life in many ways. A new kidney would make the spouse less tired, more healthy, and fit. Through the kidney donation, both donor and recipient would be released from the confinement caused by the dialysis treatment. A wife said “It’s a matter of the quality of our life, his as well as ours together,” and a husband said “I have chosen to live with her, I love her…and we’ll get a better life together.”

Logic.

A couple of respondents were reasoning with themselves in a logical way, knowing that they could live a normal life with one kidney. A wife said “I feel that if I can live with one kidney and I’ m healthy, there is no reason for me not to donate a kidney,” and a sister said “I find it difficult to imagine what kind of reasons would make one not wanting to do it.”

External pressure.

Pressure was identified in one interview. The respondent expressed that coercion was used by the recipient’s doctor: “She has sort of sneaked this in…, that perhaps you…, that even if you don’t want to, you can have a few tests taken. She has sort of started without me….” This woman didn’t dare to ponder over her donation, and continued: “I’ve made this decision to donate and…I mustn’t think about it too much…‘cause then I might find lots of reasons.”

A feeling of moral duty.

Distinct from a desire to help, a few respondents expressed that donation is something that you are expected to do. A father said “One doesn’t want to say no…it’s my daughter so…there is really nothing to discuss,” and a husband said “One wants to help; I’ve been brought up that way.”

Various combinations of these categories of motives were found in the individual interviews, although none of them contained all seven.

Factors in Support and Factors of Concern

There were several external factors in support of donation and others causing concern. These are presented in Figure 2. A great trust in the health services was a supporting factor that was expressed by virtually all respondents. This trust also included the prospects of good care if they themselves would need it in the future. The medical health screening was also unanimously appreciated. The long waiting time for a cadaveric kidney was frequently mentioned as an element encouraging donation.

F2-23
Figure 2:
Several factors worked in support of the motives and the decision to donate. Other factors were of concern but did not prevent the respondents from volunteering as donors.

Among the external factors of concern, thoughts about possible alternative donors were mentioned by several respondents. These alternative donors had either not stepped forward at all or had expressed that they were too scared to volunteer. A fear of not passing the medical screening was sometimes mentioned as a matter of concern, mainly by elderly respondents.

The Only Option

The seven categories of motives lead to a central finding, which was that all potential donors felt their donation to be the only option. The following quotations from the interviews illustrate this conclusion. A father: “My wife, she had high blood pressure and my other daughter dropped out…. I was the only one left.” A sister: “All three of us (siblings) should have been tested to check which one was best suited. Me, I phoned my brother’s doctor straight away. The others didn’t do anything but worry.” A wife: “The question is, if there aren’t any alternatives…I know he can get a cadaveric kidney…but he would have to wait then, for a long time.” A sister: “I wanted to spare her asking…and the others weren’t familiar with kidney donation at all, so I offered her mine.”

A few significant issues without immediate importance for the decision were presented during the interviews. Better information and feedback about blood tests and medical examinations during the work-up period were requested. The respondents sometimes felt they were in a void, going through a series of tests, of which they did not receive the results until much later. A wish to meet and talk to previous kidney donors was also expressed, which would have reduced the feeling of solitude.

Decision-Making Process

In the majority of cases, the decision-making process had started long before the potential donor was presented to the health care professionals. During years of consideration, the process went on under the surface, driven by the realization of the relative’s impending renal failure and the awareness of renal transplantation available as treatment for end stage renal disease: “We got to know about it a long time ago, that he might need a transplant in the future…probably 15 years back…the thoughts have been there all the time.” “The idea grew as time passed.” “As the years have gone by…I’ve understood that it’s gone worse…and when the time comes I hope I’ll be the one to give.” “It has always been there, at the back of my head…I have almost been waiting for it to happen.”

When actually facing kidney donation, the respondent stepped forward and offered to become a kidney donor. This decision was predominantly based on emotions and was felt as instantaneous. After that, the person started dealing with the various aspects described in Figure 2, factors in support and factors of concern. This reasoning involved the health care professionals. Information about the procedure and the risks involved was provided in this phase. Meanwhile, the potential donors found arguments to reduce the negative aspects: “You don’t have guaranties for anything…. You can’t live your life being worried about things that might happen.” “To think that something…I mean, if something happens in the future…it just does.” “I’ve lived a long good life…. If something goes wrong with me…that’s all the same.” “You can’t think if this or that…you have to live now…. I might as well be knocked down by a car.” By this time, they saw their donation as the only option.

As an exception, a single respondent made his decision rationally and balanced the pros and cons before volunteering to donate to a close friend. He searched for information and read everything he could find about living-kidney donation to weigh the risks and benefits. He arranged a meeting with a previous kidney donor. He checked his heredity for different diseases in his family because he was concerned that his children might need a kidney transplant in the future. Having done this, he discussed the matter carefully with his wife, and they both agreed that he should proceed.

DISCUSSION

The purpose of phenomenological research is to describe experiences and feelings as they are lived (21,23,24). Philosophers such as Husserl, Kirkegaard, Heidegger, Sartre, and Merleau-Ponty have developed the method (24). The starting point is the subjective experience: the meaning of a phenomenon will appear, as it is (21). This method was found suitable to reach an understanding of the essence of living donation. The information was received with an open mind (23,24). During the interviews, the researcher was aware of and sought to “bracket” her previous knowledge and understanding of the studied phenomenon. Furthermore, in the analysis process, the authors made an effort to maintain the sense of critical self-reflection and remained aware of their preunderstanding, assumptions, and own beliefs. It was the issues that were subjectively important to the respondents that were captured.

This study is unique in its design. It was conducted before the potential donors were accepted as kidney donors. All kinds of kinship were included, and their motives to donate were studied in depth. Most previous studies concerning the donors’ thoughts and feelings about donation have been made in retrospect (3,6,16,26–28). In that situation, it must be difficult for the respondents to separate their anticipation from their actual experience of donation.

In our study, the potential donors were selected when they were already in the work-up process at the time of the interview. If interviews had been performed with all potential donors, the impact of concerning factors would be stronger. However, the categories of motives involved are probably the same.

Motivation is a complex of subjective feelings. The seven categories of motives found in this study were revealed in different combinations for each individual respondent and lead to the point where donation became the only option. Several motives for kidney donation have been brought up previously in studies of the decision-making process, among them external pressure (3,4), moral duty (2,3), altruism and religious beliefs (2), and guilt in past relationships (2,4). Altruism and moral duty were those most often seen in our study. None of our respondents mentioned a sense of guilt as a reason to donate. However, it may exist as a rare or weak motive. The same is true for religious motives. Sweden is a secularized country where altruism is likely to be expressed as a nonreligious motive by most people.

Of all seven motives, the category of pressure is the only one that may be considered unacceptable. The mere fact that a close relative needs a kidney transplant and a living-donation program exists may exert pressure on family members. Conscious or unconscious coercion may take place when the kidney patient’s doctor also is responsible for the potential donor’s work-up process. In our view, pressure must not ever be exerted by medical staff.

The presumptive donors expressing the motive of “self-benefit from the relative’s improved health” consisted of two spouses. This is probably a strong motive when living with somebody on dialysis treatment. One can imagine social life as well as quality of life on the whole improving after successful kidney transplantation.

The seven categories of motives bore such a great impact on the decision-making that information about facts concerning medical risks contributed little. Furthermore, information was given so late in the process that the person had often lost readiness to receive it. The decision was already made. A conclusion may be that written information should be widespread and available to the general population. On the other hand, these determined donors appeared as confident and trusting individuals, not tending to reflect on risk in general. In fact, the risk could reinforce the self-esteem motive. Accepting personal risks to help other human beings is usually considered to be heroic.

Dialysis was available as an alternative option for all recipients. Transplantation was therefore not a life-saving procedure. All respondents were also aware of the possibilities of cadaveric kidney transplantation. Theoretically, there were often alternative living donors, but these were either unwilling or seen by the respondent as less suitable. The discussions of these matters within the families were remarkably limited. In spite of these alternatives, the respondents saw themselves as the only option.

The consideration of donation had been going on for a long time. Previous studies state that the decision was made instantaneously when the donors understood that their relative needed a transplant (3,15,16,19). In early studies, kidney donation was a life-saving act, but today it is not. Kidney transplantation has become rather well known to the general population. In our study, all the respondents were familiar with kidney transplantation and donation before it became an issue for their relative. This development must have affected the decision-making process. However, the predetermination proceeded unconsciously, so that the final decision, when the question was actually raised, still appeared instantaneous.

The decision was mainly based on emotions, and most respondents did not weigh risks and benefits. This finding is in line with previous studies (3,7,15). However, one respondent differed and made his decision rationally. The fact that this person was a close friend, not a relative or spouse, may be relevant.

Because of the lack of cadaveric kidneys for transplantation and the superior graft survival, the use of live kidney donors will continue and probably increase. Therefore, it is important for the health care professionals involved in living-kidney donation to comprehend how potential kidney donors experience this situation. By showing an interest in the motives to donate, or not to donate, it is possible to support the individual’s decision. The identification of the seven categories will be the basis for an investigation of a greater number of potential donors. We will then quantify and validate the findings in this study.

Acknowledgments.

The authors thank the late Doctor Clas Eriksson, Department of Nephrology, Skaraborg County Hospital, Skövde, Sweden, for his help with recruitment of suitable respondents.

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