Psychosomatics 44:452-460, December 2003
© 2003 The Academy of Psychosomatic Medicine
Guidelines for Conducting a Psychiatric Evaluation of the Unrelated Kidney Donor
Raphael J. Leo, M.D., F.A.P.M.,
Beth A. Smith, M.D., and
DeAnna L. Mori, Ph.D.
Received June 24, 2002; revision received March 10, 2003; accepted March 31, 2003. From the Department of Psychiatry, School of Medicine and Biomedical Sciences, State University of New York at Buffalo; and the Department of Psychology, Veterans Affairs Boston Healthcare System and Boston University School of Medicine, Boston. Address reprint requests to Dr. Leo, Department of Psychiatry, School of Medicine and Biomedical Sciences, State University of New York at Buffalo, Erie County Medical Center, 462 Grider St., Buffalo, NY 14215.
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ABSTRACT
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Living unrelated kidney donors have been increasingly sought out as potential resources for patients with end-stage renal disease. Several psychiatric issues must be factored into the presurgical evaluation of prospective donors. This paper describes a proposed guideline intended to assist clinicians in the psychiatric evaluation of prospective kidney donors. Topics covered in the interview include the prospective donor's stability and ability to make an informed decision, the donor's understanding of the recipient's illness and of the transplant surgery, and extenuating factors that may influence the decision to donate. While efficient and thorough, the guideline is intended to be flexible enough to address the variety of issues that can affect the prospective donor's decision to pursue surgery.
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INTRODUCTION
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Transplantation is considered to be the optimal treatment for patients with end-stage renal disease because this intervention remedies many of the physiological problems associated with renal dysfunction and improves the quality of life of patients who are otherwise dependent on dialysis. Unfortunately, the need for kidneys far exceeds the available supply of donated kidneys. In February 2002, the United Network for Organ Sharing indicated that 50,955 patients were waiting for a kidney transplant. Only 13,372 individuals received a kidney transplant in 2000, and nearly 3,000 people with end-stage renal disease die annually while awaiting compatible organs.1
The majority of transplanted kidneys are derived from cadaveric sources. Because of the limited numbers of transplantable organs, psychiatric consultation has traditionally been employed to assess the suitability of potential kidney recipients. Such evaluations have focused on psychiatric disturbances, past compliance with treatment recommendations, and social support systems that affect compliance.2 Instruments such as the Structured Interview for Renal Transplantation were developed for this purpose.2
Transplant surgeons have increasingly been looking to prospective kidney sources derived from living donors. Early on, donations were commonly obtained from related family donors (e.g., parents, children, siblings). Between 1988 and 1997, a substantial proportion of donated kidneys were derived from living unrelated donors, most commonly from spouses.3 The success rate associated with renal transplants derived from living unrelated donors has been substantially higher than that associated with renal transplants from cadaveric sources and even slightly higher than that associated with transplants from living related donors.1,4 For example, it has been shown that 3-year survival rates are 85% after kidney transplant from spousal donors; 82% after transplant from living related donors; and 70% after transplant from cadaveric sources.4 Kidney transplants derived from living unrelated donors remain highly successful for a protracted period and appear to be superior to cadaveric donor grafts in 5- and 12-year follow-up studies.5–7 The success of living unrelated donor transplantation has been attributed to the fact that surgery can be scheduled electively, thus contributing to improved kidney functioning immediately posttransplant, and to the advances made in immunosuppressive agents.8
Given the limited availability of donated organs and the success of kidney transplants from living unrelated donors, i.e., from  emotionally related sources such as friends, spouses, etc., transplants from such donors have been explored with increasing frequency. However, the ethics of including unrelated living donors as potential sources of needed kidneys has been the focus of discussion and debate.9 Several issues that should be considered arise in the process of assessing individuals for their appropriateness to be a living unrelated donor.
The role of the consultation-liaison psychiatrist has expanded to include evaluations of the prospective donor. When a living donor is involved in the transplant process, another dimension is added to the complexity of this evaluation. The relationship between the recipient and donor and the potential implications of entering into such an agreement need to be explored thoroughly. These issues are important from the perspective of the recipient as well as the donor. As there are no intrinsic or offsetting benefits to the donor, it becomes important to thoroughly assess the motives that underlie the decision to donate. For example, some living unrelated donors may feel compelled to donate because of personality factors, factors based on the relationship between the donor and recipient, mood disturbances, and psychiatric issues. The well-meaning donor may not fully appreciate the magnitude of the transplant process or may not anticipate issues that can arise in the scenario of either a successful or unsuccessful transplant. Furthermore, it is critical to determine whether the donor is making the decision to undergo this invasive procedure while fully knowledgeable about the potential risks and complications, and that he or she is acting on his or her own free will, without any evidence of coercion.10
This article addresses the range of psychological issues that are important to assess when evaluating prospective living unrelated donors and presents an interview format to facilitate the evaluation process. There is a dearth of literature providing guidelines for conducting these types of assessments. As obtaining kidneys from living donors becomes an increasingly common practice, it will be important for consultation-liaison psychiatrists to familiarize themselves with the issues that need to be assessed during such an evaluation. The interview guideline presented here has been adapted from the Structured Interview for Renal Transplantation,2 which is used to determine the psychological appropriateness of renal transplant recipients. The guideline, shown in its entirety in Appendix 1, Appendix 1 (continued), and Appendix 1 (continued), is designed to aid the clinician in obtaining a comprehensive history of pertinent information about potential renal transplant donors. It is not necessary for the clinician to adhere rigidly to the interview format outlined here. For example, the interviewer would need to use clinical judgment particularly when pursuing sensitive lines of inquiry to elaborate and clarify certain issues, such as overt or covert coercion, that are raised during the interview. The guideline is intended to educate psychiatrists, trainees, and colleagues in nephrology and surgery about the psychological factors that affect the donation process. If, in the course of the evaluation, a prospective living unrelated donor is deemed to be an inappropriate candidate from a psychological perspective, the information gleaned from this interview can be used to identify issues that can be addressed therapeutically to optimize the outcome for both the donor and the recipient. Examples of issues encountered from actual evaluations that we have conducted with prospective donors are provided. (The identifying characteristics of the cases have been changed to ensure donor anonymity.)
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COMPONENTS OF THE EVALUATION OF PROSPECTIVE RENAL DONORS
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The first element in the evaluation of a prospective renal donor addresses issues pertinent to informed consent. It is imperative to assess the prospective living unrelated donor's understanding of the recipient's illness (e.g., understanding of the recipient's renal disease, the necessity and urgency of the current transplant, and the other treatment options available to the recipient) and knowledge of the transplant surgery (including risks and benefits affecting the recipient and donor and the risks of transplant rejection. It is important to ensure that the donor is not minimizing the risks to himself or herself and that he or she is making a well-informed decision. Education about these issues may be required to ensure that the donor is making a fully informed decision.
Second, it is important to assess how the donor candidate was enlisted and to assess the relationship between the prospective donor and recipient. Toward this end, it is helpful to determine how the decision to donate was made. The questions posed in this section are designed to probe for indications of pressure, coercion, threats, or bribes to donate. It is important to assess the quality of the relationship between the prospective donor and recipient, including its history and longevity; the nature of the relationship, including the presence of conflicts and dependency issues; and how the relationship is expected to change as a result of the kidney donation.
Critical to the assessment process is exploration of the potential donor's motivation to donate. Although donation is frequently thought of as a purely altruistic act, it is not uncommon for the donor to hope that donation will bring about some positive change in the relationship with the recipient. For example, it is not uncommon to encounter individuals who hope that donation would elevate one's status with the recipient. Similarly, the decision to donate might be motivated by attempts to make reparation for wrongs committed in the past or to secure a commitment from the recipient, e.g., a marriage proposal.
Case Vignette 1
A woman was evaluated for her appropriateness to donate a kidney to her long-term boyfriend. It became clear that the potential donor had a much stronger attachment to the recipient than was the reverse. The potential donor spoke openly of her strong commitment to the relationship and her complete absence of ambivalence about her decision to donate her organ. The recipient clearly appreciated the offer but had some worries that accepting the donated kidney would make him feel indebted. He was very conflicted, but he also minimized his concerns because he was a young man who very much wanted to discontinue dialysis and start a new life with a new kidney. Although it was never explicitly stated, it became increasingly clear that part of the girlfriend's motivation to donate her organ was to establish a lifelong bond with her boyfriend, a commitment that he had otherwise been ambivalent about making. This was a difficult case to evaluate since neither party was speaking openly about their motivation and concerns, and the girlfriend appeared, on the surface, to be ideally suited to donate. In the end, the recipient became increasingly anxious about committing himself to this relationship by accepting his girlfriend's kidney and opted to wait for a cadaveric transplant.
It is essential that the potential donor retain the right to reconsider donation at any point of the evaluation process. The factors that might influence such reconsideration include economic factors, the donor's own medical history, and family medical history. Psychiatric assessment, therefore, must assess to what extent the donor has considered such factors and the extent to which the implications of donation have been considered. The prospective donor may be reluctant to reconsider after undertaking medical procedures to determine the suitability and compatibility of donation. Ambivalence may be demonstrated in the prospective donor's failure to follow through with the necessary presurgical medical investigations.11 The recipient may have built up hopes about transplantation, making it harder for the donor to reconsider. It is important to explore factors that might influence the potential donor's ability to reconsider, e.g., how the donor thinks a reconsideration would be perceived by the recipient or others. If the prospective donor is reconsidering the decision to donate or is ambivalent about following through with the surgery, he or she may be unable to address the topic openly with the recipient.
Case Vignette 2
A man who offered to donate an organ to a close family friend of his parents was evaluated. Although the potential donor initially appeared highly motivated to donate his kidney, it was learned through careful interviewing that the close family friend had made inappropriate sexual overtures to him and that the potential donor actually disliked the recipient. Although it was obvious that donating an organ in this case was clearly contraindicated, the potential donor did not feel comfortable telling the recipient that he was no longer interested in being a donor for fear of retaliation. He also did not feel comfortable explaining the situation to his parents. This situation was handled by a staff member, who interceded to inform the recipient that the potential donor was not a suitable match without providing any specific information. The staff member also suggested to the potential donor that he obtain psychological services to address his involvement in this destructive relationship.
Input from family members is important, as donation can be stressful and compound distress, especially if relationships are already troubled. If the recipient is not a family member, donation may be viewed as jeopardizing the family to afford benefit to a nonrelated recipient, e.g., incurring a risky surgery that could mean long-term disability or even death as well as the loss of a prospective kidney donor should the need arise within the donor's family.
Case Vignette 3
A young woman was evaluated as a prospective donor for her lifelong friend. Although her family supported her decision to donate, the prospective donor felt that she needed some assurance that her own young child would not need her kidney at a later time. The donor arranged for her daughter undergo a renal workup, including ultrasound, whereupon she found that her daughter's renal functioning was normal. She spoke with family members to ascertain whether there was even a remote history of disease within the family that might incur risks for her child at some point in the future. The prospective donor had the forethought and understanding to know that she could only feel comfortable about donating her kidney to her friend if she knew with some certainty that her daughter was not at risk for kidney disease that might require transplant in the future. Taking these steps allowed her to obtain some reassurance about her decision.
The donor's educational history may alert clinicians to barriers to informed consent or to the donor's understanding of the potential immediate and long-term effects of donation. Employment status is important, as employers are a principal source of economic support during the postsurgical recovery period through the provision of sick leave and vacation time.
The donor may face the prospect of financial hardship, as well as effects on life and health insurance. The surgery often involves nonreimbursable expenses that may lead to economic distress (e.g., travel expenses and the cost of routine follow-up in the years after surgery) and, more rarely, difficulty in maintaining or obtaining health, life, or disability insurance.12
The potential donor may reconsider donation as a result of the evaluation procedure itself. For example, how well the donor tolerates the procedures and his or her reactions to the procedures and findings may affect the decision to undergo further medical testing or procedures.
Religious beliefs can be both a source of support through this process as well as a factor that is motivating donation. The potential donor's religious affiliations and views about faith and prayer are assessed as part of the interview. The clinician must also consider the possibility that, even if the donor is motivated by religious beliefs, the donor's motivations to proceed with transplantation may be pathological. There are, however, legitimate cases where the donor's sole motivation is religiously based altruism, and this influence should be acknowledged.13
Case Vignette 4
A man who was considering donating a kidney to his minister was evaluated. Throughout the interview, the donor made frequent references to his religious beliefs. Initially, religiously based altruism appeared to be the donor's primary motivation for offering his kidney. To provide support for the religious motivation underlying his desire to donate, he presented a memo he had sent to his family in which he wrote one could cite numerous scriptural references as to why a person would give a kidney to someone in need. To further support the veracity of his religiosity, he stated that most of his affiliations were through the church community. However after a careful interview and assessment of the prospective donor's personality type, it was found that the donor was also motivated by a need for admiration. He was receiving a great deal of attention from family members, friends, and co-workers and later from strangers who had heard of the donation on the local news. This new dimension changed the treatment plan, as it was determined that the prospective donor needed help in acknowledging that he was motivated, at least in part, by the attention he was receiving for his altruistic act. Furthermore, it was important to help him recognize that the process could eventually become quite disappointing, particularly once the attention faded, as it inevitably would.
The final set of factors that should be considered in the evaluation of the prospective donor include the prospective donor's psychiatric history, coping styles, and cognitive functioning. Thus, inquiry is made into the donor's history of psychopathology, psychiatric treatment, and substance abuse. Even if these factors are not currently present, caution is advised, as it is not uncommon for donors to experience symptoms of depression and anxiety after the transplant. Thus, it is important to also examine the donor's repertoire of coping skills, characteristic defenses, and social support network. The mental status examination may draw attention to deficiencies in the donor's cognitive functioning that may raise concerns about the donor's suitability.
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DISCUSSION
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The enormous demand for kidney donations for patients with end-stage renal disease and the increased success of grafts obtained from living unrelated donors has led to a growing trend toward using organs from living donors for renal transplantation. Survey findings have suggested that the vast majority of respondents believe that donation by friends and altruistic strangers is an acceptable practice and that many would consider donating to friends or strangers themselves.14 The consultation-liaison psychiatrist can play a pivotal role in the presurgical screening of potential donors. In addition to assessing the psychiatric appropriateness of the prospective donor, the psychiatrist may have to assess the complex psychological issues that affect the donation process. The guideline offered here provides a comprehensive structure for such assessments, while also allowing for flexibility. It focuses on evaluation of whether the donor candidate has made an informed decision, evaluation of the donor's stability, detection of any psychopathology, and clarification of extenuating factors that may interfere with or maintain the decision to donate. Many prospective donors rapidly make the decision to donate, before inquiring about and considering possible risks or benefits.15 In screening candidates for renal donation, it must be ensured that the prospective donor understands and can articulate the possibility of both personal risk and the risk that the graft may fail.
Psychiatric evaluations are helpful in detecting persons who have significant psychiatric risk factors that can make them less than ideal prospective living donors. Chronically psychotic patients and patients with mental retardation, significant mood disorders, substance abuse, or severe personality disorders are often not suitable candidates for renal donation, since their impairment would likely affect their ability to make a well-informed, rational decision about donation (Table 1). Although a previous history of significant mental and emotional instability is generally considered a contraindication to donation, it does not necessarily eliminate the possibility of donation. For example, a prospective donor who has been able to maintain stability for a sustained period of time may, in fact, be quite suitable as an actual donor. Psychological clearance for donation must be evaluated on an individual basis. There are as yet no data to substantiate prediction of which donors are at risk for psychiatric complications arising from the transplant process.
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TABLE 1. Poor Prognostic Factors That May Be Identified in Presurgical Psychological Screening of Prospective Living Unrelated Kidney Donors
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Preexisting depression can put a prospective donor at risk. Depending on the severity of the disorder, past depression or current symptoms may be a contraindication to surgery. Some donors may experience a sense of depression or loss immediately after the surgery, which may exacerbate depressive symptoms, particularly if the donor was inadequately prepared for the postoperative course. Similarly, depression can also result from failure of the transplantation or the death of the recipient. Suicide has been reported among donors after organ rejection and the subsequent death of the recipient.16 A thorough preoperative psychiatric assessment of potential donors may help identify those who might benefit from postoperative psychiatric care. Issues that may need to be addressed include the trauma of failure and/or loss, prominent personality characteristics that may impede hospital management and recovery, dependency conflicts that are magnified by the transplant, issues of indebtedness that may arise, and concerns about changes in the donor's body image after the transplant.
The underlying motivation in many donation scenarios is the donor's emotional tie to the recipient, and, in fact, it has been found that the emotional bond after donation tends either to remain stable or to improve.12 However, no matter how the donor conceptualizes his or her motivation, the clinician must always consider the possibility of inappropriate or pathologic motives. Although the donor may adamantly defend his or her decision, the clinician should nonetheless ask questions about their motivation to donate the organ and should rule out any possibility of coercion or pressure. The clinician should ensure that the donor has established psychological homeostasis in relation to the decision to donate.17,18
Even after the decision to proceed with the transplant is made, the donor may require psychiatric intervention. For example, intervention may be necessary to address preoperative anxiety. The donor may need to address the fear of giving a potentially necessary organ to someone else or the fear that their remaining kidney could malfunction. Regardless of whether the potential donor is biologically related or emotionally close to the recipient, he or she may have conflicted feelings about proceeding with the donation when someone else, perhaps a family member or a child, may need the kidney someday. Although these fears and anxieties may be normal, such issues should be adequately worked through with the donor before he or she proceeds with the donation.
If a prospective donor is found to be psychiatrically unsuitable, ambivalent about donation, or experiencing pressure or coercion to donate, he or she should not be recommended for the transplantation procedure. However, even if the person is found to be a suitable donor, he or she has the right to reconsider up until the date of the surgery. When a potential donor is eliminated or reconsiders the decision to donate, he or she may need assistance to develop a face-saving way to decline participation and may require therapy to work through any ensuing guilt.
Although donation involves psychological risks, the weight of evidence indicates that, overall, kidney donation has a favorable outcome for the donor.11 Many donors have expressed persisting positive feelings toward kidney donation, irrespective of outcome,19 and have reported experiencing increased self-esteem.15 Longitudinal follow-up of donors has suggested that kidney donation does not cause long-term negative psychological outcomes.12,15,19
It is expected that as living unrelated kidney donors are increasingly recruited for prospective transplants, more clinicians will be called upon to conduct psychiatric evaluations of prospective donors. This task can be difficult, since the objective is typically different from that of a standard psychiatric interview and the information that needs to be gleaned can be very sensitive. The guideline provided here can serve as a tool for conducting these evaluations and can be particularly useful for clinicians in training and clinicians who may have limited experience in this area. Even seasoned clinicians can benefit from using this guideline, which facilitates the systematic collection of relevant information.
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REFERENCES
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- 2000 Annual Report of the US Scientific Registry for Transplant Recipients and the Organ Procurement and Transplant Network: Transplantation Data:1990–1999. Rockville, Md, and Richmond, Va, US Department of Health and Human Services, Health Resources and Services Administration, Office of Special Programs, Division of Transplantation and United Network for Organ Sharing, 2002
- Mori DL, Gallagher P, Milne J: The structured interview for renal transplantation—SIRT. Psychosomatics 2000; 41:393–406[Abstract/Free Full Text]
- 1998 Annual Report of the US Scientific Registry for Transplant Recipients and the Organ Procurement and Transplant Network: Transplantation Data:1988–1997. Rockville, Md, and Richmond, Va, US Department of Health and Human Services, Health Resources and Services Administration, Office of Special Programs, Division of Transplantation and United Network for Organ Sharing, 2000
- Terasaki PI, Cecka MJ, Gjertson DW, Takemoto S: High survival rates of kidney transplants from spousal and living unrelated donors. N Engl J Med 1995; 333:333–336[Abstract/Free Full Text]
- D'Alessandro AM, Pirsch JD, Knechtle SJ, Odorico JS, Van der Werf WJ, Collins BH, Becker YT, Kalayoglu M, Armbrust MJ, Sollinger HW: Living unrelated renal donation: the University of Wisconsin experience. Surgery 1998; 124:604–610[CrossRef][Medline]
- Gjertson DW, Cecka MJ: Living unrelated donor kidney transplantation. Kidney Int 2000; 58:491–499[CrossRef][Medline]
- Lowell JA, Brennan DC, Shenoy S, Hagerty D, Miller S, Ceriotti C, Cole B, Howard TK: Living-unrelated renal transplantation provides comparable results to living-related renal transplantation: a 12-year single-center experience. Surgery 1996; 119:538–543[CrossRef][Medline]
- Matas AJ, Payne WD, Sutherland DER, Humar A, Gruessner RW, Kandaswamy R, Dunn DL, Gillingham KJ, Najarian JS: 2,500 living donor kidney transplants: a single-center experience. Ann Surg 2001; 234:149–164[Medline]
- Hou S: Expanding the kidney donor pool: ethical and medical considerations. Kidney Int 2000; 58:1820–1836[CrossRef][Medline]
- Fellner CH, Marshall JR: Kidney donors—the myth of informed consent. Am J Psychiatry 1970; 126:1245–1251[Abstract/Free Full Text]
- Surman OS: Psychiatric aspects of organ transplantation. Am J Psychiatry 1989; 146:972–982; correction, 146:1523[Abstract/Free Full Text]
- Smith MD, Kappell DF, Province MA, Hong BA, Robson AM, Dutton S, Guzman T, Hoff J, Shelton L, Cameron E, et al: Living-related kidney donors: a multicenter study of donor education, socioeconomic adjustment, and rehabilitation. Am J Kidney Dis 1986; 8:223–233[Medline]
- Dixon DJ, Abbey SE: Religious altruism and organ donation. Psychosomatics 2000; 41:407–411[Abstract/Free Full Text]
- Spital A: Public attitudes toward kidney donation by friends and altruistic strangers in the United States. Transplantation 2001; 71:1061–1064[Medline]
- Fellner CH, Marshall JR: Twelve kidney donors. JAMA 1968; 206:2703–2707[CrossRef][Medline]
- Weizer N, Weizman A, Shapira Z, Yussim A, Munitz H: Suicide by related kidney donors following the recipients' death. Psychother Psychosom 1989; 51:216–219[CrossRef][Medline]
- Knight JA: The liaison psychiatrist in kidney transplantation. Int J Psychiatry Med 1980–1981; 10:221–233
- Abram HS, Buchanan DC: The gift of life: a review of the psychological aspects of kidney transplantation. Int J Psychiatry Med 1976–1977; 7:153–164
- Sharma VK, Enoch MD: Psychological sequelae of kidney donation: a 5–10 year follow up study. Acta Psychiatr Scand 1987; 75:264–267[Medline]
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O. S. Surman, I. Fukunishi, T. Allen, and M. Hertl
Live Organ Donation: Social Context, Clinical Encounter, and the Psychology of Communication
Psychosomatics,
February 1, 2005;
46(1):
1 - 6.
[Abstract]
[Full Text]
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ABSTRACT
INTRODUCTION
