Fig. 11.1
Emotional relatedness: How unrelated are unrelated donors?
Increasing Numbers of Unrelated Donors
In the US, unrelated kidney donations have markedly increased over the past 20 years, with over 2,000 in 2012, or 37 % of the total number of living kidney donors [1] (Fig. 11.2). In contrast, unrelated donors constituted only 4 % of all donors 20 years earlier. Over the past 20 years, the composition of the pool of unrelated donors has also changed. Since the advent of paired kidney exchange donation in the early 2000s and domino chains later in the decade, the number of kidney donors participating in these programs has increased, and they constituted about 9 % of all donors in 2012. The numbers of anonymous nondirected donors have increased as well. There were no such donors in the early 1990s, but they accounted for 3 % of all donors by 2012. The situation in living liver donation is somewhat different. The total number of living liver donors is considerably smaller, rising over the past 20 years from just 33 in 1992 to 363 by 2012. The proportion of unrelated donors has increased from 12 % to 26 % over that time. However, the vast majority of unrelated living liver donors are directed donors (i.e., they have some connection with the intended recipient even if it is not a close connection). In addition, the majority of living liver donors continue to be individuals who are biologically related to the transplant recipient.
Fig. 11.2
Changing distributions of types of living kidney donors in the US (data from OPTN/UNOS [1]). Unrelated donors include nonbiological directed donors, anonymous donors, and exchange donors
Increasing Acceptance of Unrelated Donors
The increasing number of unrelated donors by itself suggests a trend toward greater acceptance by transplant programs of the idea that these individuals are suitable and appropriate donors. In addition, several surveys of transplant programs over the past 20 years directly show that attitudes toward unrelated donation have become gradually more favorable. In 1999, while almost all surveyed programs responded that they would consider a close friend as a donor, only 38 % of programs said they would consider an altruistic/stranger donor (compared to 8 % in 1987) [2]. Interestingly, at that same time a public survey of over 1,000 US adults showed that 90 % supported the concept of close friend donors and 80 % accepted donation by altruistic strangers [3].
A recent survey of 132 US kidney transplant programs (53 % of programs listed by the United Network for Organ Sharing (UNOS) revealed that now most programs, but not all, accept donors other than immediate family, close friends, or extended family members with close emotional ties to the intended recipient [4]. For a variety of other types of donor–recipient relationships, the programs’ acceptance lies along the continuum of emotional connectedness. Programs had greater concern as the emotional connection between donor and recipient becomes weaker. For example, while 92 % said they would find a patient’s coworker to be acceptable as a potential donor, 74 % felt that acquaintances with no emotional ties to the recipient would be acceptable, 61 % thought nondirected donors were acceptable, and only 30 % were willing to consider publicly solicited donors [4]. There was some evidence that programs in geographic regions with longer wait times and lower deceased organ donation rates were more likely to consider unrelated donors for their patients [4]. At the time of this survey, while most programs required all donors to undergo a mental health evaluation, 10 % of programs required only certain types of donors (e.g., unrelated donors) to be seen for more extensive consideration by a mental health professional [4]. Notably, at the time of this survey only about half of the kidney programs were participating in paired kidney exchange. Even more importantly, although many programs appeared to support the concept of unrelated donors , in practice, these types of transplants remain less common than those with biologically or closely emotionally related donors (i.e., spouses). Thus, while agreeing philosophically with the concept of unrelated donors, when faced with an actual volunteer, programs might be reluctant to proceed, with many programs expressing concerns about the motives of a completely unrelated donor [2, 4].
Ethical and Psychosocial Issues Arising from Increases in Unrelated Donations
The need for and acceptance of unrelated donors has been driven by the continued shortage of donor organs relative to patients who need transplants. Recognition that biologically unrelated donor grafts (e.g., from spouses) did not adversely affect donor medical outcomes [5, 6] set the stage for consideration of a much wider population of potential donors. It also allowed for the development of novel approaches to the use of organs from unrelated kidney donors to increase the numbers of transplants performed, including paired exchanges and domino chains (see Chap. 2). However, the increase in unrelated donors has also prompted concerns at the stages of screening prospective donors and conducting the pre-donation psychosocial evaluation ; concerns regarding the informed consent process for these individuals to ensure that they understand what they are volunteering to do; and concerns about whether these donors have unique psychosocial risks and require more careful follow-up after donation [7]. In the remaining sections of the chapter, we address issues in each of these domains, particularly as they pertain to the ILDA’s involvement and responsibilities in donor care.
Screening and Evaluation of Prospective Unrelated Donors
Screening and Types of Unrelated Donors that Provoke Heightened Concern
Most donor programs conduct an initial screen with prospective donors before they are asked to come in for a full medical and psychosocial evaluation . This screen is often conducted by telephone. ILDAs may perform screens, but the screens are more typically completed by a living donor coordinator, who may consult with the ILDA if concerns arise. Some types of unrelated donors who come forward for initial screening may indeed raise such concerns, as enumerated in a consensus conference offering guidelines for the screening and evaluation process [7, 8]. Such individuals include those who are:
Solicited from the internet or other social media appeals,
In a superior/subordinate relationship with the intended recipient (employers/employees; teachers/students),
Of very low socioeconomic status,
Foreign nationals,
Members of organizations/faith communities,
Seeking to make an anonymous donation (either directed or nondirected), and
Involved in paired/list exchange or chain donation.
It is noteworthy that the concern is not that these individuals should automatically be ruled out as donors (although sometimes this may indeed be the case). Instead, these individuals and their circumstances often require more extensive psychosocial evaluation in order to determine whether donation is a realistic possibility for them. Thus, the telephone screen is helpful for identifying initial “red flags” that will require more attention in the full-scale psychosocial evaluation. For example, as we discuss later in the chapter, there are varying ways in which coercion or undue pressure could influence or affect some of these types of donors. In addition, individuals coming forward as unrelated donors may have much less knowledge about the transplantation process than individuals who have seen a loved one become ill and cope with chronic illness. They may have also been influenced by the emotional appeal of a case in the news or an acquaintance who has become ill, without having yet had the time to learn about the range of treatments that might be available to the ill individual or the risks associated with donation. Some persons interested in unrelated donation may not understand even rudimentary aspects of what donation entails.
Case Vignette
A young woman called a donor program to ask if she could be considered as a donor for a coworker. She said that she had not yet talked to her coworker about it, but she had read a considerable amount on the internet about kidney donation and she felt that it was the right thing for her to do.The living donor coordinator, as part of the program’s standard screening protocol, began to review the steps that would need to be undertaken in order for the woman to be evaluated for donation, and commented on the surgery and how long the recovery period typically lasted. At that point, the young woman said, “Oh, you mean this requires surgery?” She said that she would have to think more about it and would call back if she wanted to continue to move forward.
The telephone screen allows an initial opportunity for the donor program to begin the process of learning about the prospective donor and also educating him or her about donation. If it is not automatically clear that a prospective donor is medically or psychosocially unsuitable for or uninterested in further evaluation, then the prospective donor is typically scheduled for such evaluation.
Special Considerations in the Psychosocial Evaluation of Unrelated Donors
The psychosocial evaluation that is conducted with prospective unrelated donors who come to the donor program for a full workup is in many ways identical to that conducted for any other prospective donor. Thus, the central goals for the evaluation are to (1) identify and appraise risks for poor psychosocial outcomes, (2) assess donor capacity to understand information and make decisions, and (3) identify factors warranting intervention before donation can occur [7–12]. In order to accomplish these goals, the evaluation includes a variety of components: obtaining standard information on demographic and psychosocial history; determining the individual’s cognitive capacity; ascertaining mental health history and current status; examining donor motivation; exploring the nature of the relationship (if any) with the intended recipient; assessing knowledge, preparation, and expectations for donation surgery; assessing available social supports and attitudes of others about the donation; and reviewing financial considerations [7–15]. Although there are no national standards for the exact content or process of conducting the psychosocial evaluation , the domains listed earlier cover the elements currently required by Organ Procurement and Transplantation Network (OPTN) policy [16]. In conjunction with recently approved policy modifications, the OPTN/UNOS Living Kidney Donor Psychosocial Evaluation Checklist provides a useful tool to ensure that essential elements are covered in the evaluation [17].
In some programs, the ILDA may conduct the psychosocial evaluation . In other programs, the ILDA does not conduct the evaluation but must carefully review its results, along with meeting the prospective donor to review and discuss all aspects of the medical and psychosocial evaluation process. For unrelated donors , key components of the psychosocial evaluation require more extended consideration, both during the evaluation itself as well as in any separate meeting the ILDA has with the individual. We have listed several of those components in Table 11.1: those related to motivation, relationship with the intended recipient, knowledge, social supports, and financial issues. We have also enumerated in Table 11.1 important issues and questions to be asked, as well as “red flags” that, if present, could indicate that the individual is not a suitable donor [7, 8, 13–15]. We note that many of these issues could apply to biologically and emotionally related donors as well. Our point is, however, that they are often of heightened importance when evaluating unrelated donors . For example, “red flags” when assessing prospective unrelated donors’ motives would include evidence uncovered of a desire to form a relationship with intended recipient even if the donor is going to engage in anonymous nondirected donation, or evidence that the prospective donor is seeking public recognition of their act of donation.
Table 11.1
Components of the psychosocial evaluation for living organ donors: Issues to cover, examples of questions to ask, and responses suggesting heightened risk
Issues to cover | Types of questions | Red flags |
|---|---|---|
Motives for donation | ||
Reasons for coming forward Decision-making process Coercion or inducement Ambivalence If relevant: views and understanding of kidney exchange | How did the prospective donor learn about the possibility of donating? Did someone ask the donor to come forward? Was there pressure to donate from anyone or because the situation appears urgent? What is the primary motivation for donation? Why donate? Why now? What volunteer or helping acts have been most important in the individual’s life up to this point? Are there other possible donors? What if someone else could do it instead? Did anyone attempt to influence the individual’s decision to come forward? Did anyone state or imply that there could be negative consequences for the individual if they did not come forward? Or that the individual would receive something (tangible or non-tangible goods) if he/she came forward? What does the individual see as the consequences to him/herself if the donation does not occur? How would a donor feel if a deceased donor organ became available? Would not donating to a loved one change their feelings about willingness or desire to donate? If option for kidney exchange is present: Does the option of chain/exchange make the donor feel obligated to donate? Does the donor feel any pressure that many other donors/recipients may be counting on them? | Prospective donor made a blind agreement to donate with no information (e.g., promise to “do anything to help” long before donation was needed) Donor has a history of impulsive decision making, uses poor judgment, and is an excessive risk taker Desire to: Atone for or reduce a sin Form a (closer) relationship with the intended recipient Make up for past problems with others/loss of loved one Serve humanity despite no evidence of past service Gain recognition from others for act of giving Obtain financial rewards/benefits Donor is counting on a deceased donor organ becoming available Donor is hoping someone else will come forward to donate If option for kidney exchange is present: Donor feels less capable of deciding not to donate, or pressured to participate in an exchange Donor feels guilty or as if they would let others down if they did not participate |
Relationship with intended recipient | ||
Nature of any existing relationship Degree of closeness (if any) of relationship Perceived obligations/expectations | How long have the prospective donor and intended recipient known each other? When/how did they meet? What is the relationship like? Does the donor feel any obligation to donate? Will the intended recipient feel indebted? How will the relationship change if the donation takes place? Or if it does not take place? How will the donor view the recipient’s behavior after transplant (e.g., if the recipient is not adherent)? How will the donor feel if he/she never meets (or rarely sees) the recipient? | Prospective donor wants to have an upper hand in the relationship; desire for control Donor has a subordinate relationship to the intended recipient (e.g., employee) Relationship has a history of conflict or estrangement Donor is worried about what will happen to the relationship if donation cannot occur |
Knowledge about surgery/recovery | ||
Understanding of risks Understanding of likely outcomes Expectations | If the prospective donor knows the intended recipient, does the donor understand what type of disease the recipient has? Are there treatment alternatives to a living donor transplant? Has the recipient received a transplant before? Why is another transplant needed? What does the donor understand to be the risks/benefits to the recipient? What are the major risks to the donor? How does the donor expect his/her own postoperative recovery to go? How would the donor feel if the donated organ turned out to be of little or no benefit? Or if the recipient died? | Prospective donor cannot articulate recipient risks/benefits Donor cannot articulate his/her own risks Donor expresses no sense of concern in the event that the transplant procedures prematurely end his/her life Donor says that if the recipient does not survive the transplant, then neither should the donor Donor expects no short-term physical impairments after the surgery Donor expects to be able to return to work within days after the surgery |
Social supports and others’ attitudes | ||
Nature of existing family, friend, employer networks Emotional and practical support available from family, friends, employer Pressure or opposition from family or friends about donation | Did the prospective donor consult with his/her spouse/partner?
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