Ethical Dimensions of Living Organ Donation
Psychosocial factors in living organ donation: clinical and ethical challenges

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Abstract

Living donor surgery has come to the forefront of public attention because increasing numbers of potential donors respond to the organ shortage. Because of several factors including decreased morbidity from donor surgery, online resources appealing for organs, and increased publicity about donation, new populations of unrelated donors are seeking evaluation for donor surgery. However, concern about potential coercion of vulnerable individuals, the potential for adverse psychosocial outcomes, and recent reports of donor deaths have reinvigorated discussion within the medical community about how best to assess donors. Research on the long-term quality of life outcomes for donors suggests that most donors are satisfied with their decision to donate. Small single-center studies on psychosocial outcomes have reported psychiatric sequelae after donor surgery. Little is known about the psychosocial outcomes for donors who are psychosocially excluded from donating.

A multidisciplinary team approach, including social work and psychiatry evaluations, allows for the comprehensive assessment of important areas including motivation and expectations about surgery, current and past psychiatric conditions, history of substance or alcohol abuse, family support, understanding of the risks and alternatives of donor surgery for the donor and recipient, and motivation for donation including any evidence of coercion.

Introduction

Kidney donation has been performed in the United States for more than 50 years and has evolved from a surgery typically performed on genetically related individuals undergoing an open laparotomy to a laparoscopic procedure resulting in a short hospital stay and recuperation. With the advent of improved immunosuppression [1] and less invasive surgery [2], increasing numbers of living donors, both related and unrelated, are presenting for consideration of kidney donor surgery [3]. Transplants using living donor organs result in better outcomes for recipients [4]. The potential benefits from receiving a transplant and demand for organs have driven the need for an increased donor pool, necessitating further refinements in the psychosocial assessment of donors, and have led to an increased interest in donor outcomes after surgery. The increased rates of morbidity and mortality for lung and liver donors have raised public awareness about the risks of donor surgery, resulting in increased scrutiny by the public and state and federal government agencies [5].

Kidney donation was first performed in 1954 between identical twins. This early surgery resulted in a reasonable outcome because of the genetic similarity between the donor and the recipient. However, early on the lack of robust immunosuppressive agents initially resulted in less satisfactory outcomes after the transplantation for recipients. Family members often volunteered to donate and typically responded to the familial sense of obligation. Spital [6] described this obligation as the ethic of care in which emotional bonds catalyze the decision to act altruistically to help another despite placing themselves at risk.

Organ donors increasingly are not genetically related to the recipient and include spouses, friends, acquaintances, and individuals informed of the need for a donated organ through a media appeal or Internet communication. In 2004, a Web site was created for the purpose of matching potential donors with recipients [7], [8]. The psychosocial characteristics of donors who have limited emotional ties to the recipient are unknown. Concern has been raised about the potential for exploitation of emotionally vulnerable individuals responding to an emotional appeal for a donor organ [9]. Outcomes for nondirected donors presenting to transplant centers and exchange pair donors who are unrelated to the recipient but whose actions benefit a loved one suggest generally good psychiatric outcomes [10], [11].

The main justification for permitting risk to living donors undergoing surgery has been respect for the donor's autonomy to act altruistically, which allows the donor to act on the desire to help another person despite the potential risks of the surgery. One's ability to provide consent freely without coercion is fundamental to this process. The process of consenting encompasses the donor's capacity to make medical decisions, disclosure of potential risks, understanding of the procedure, and the absence of coercion or manipulation. Efforts to ensure the autonomy of donors center on donors being fully informed about the risks and benefits of donor surgery and assessing for the possibility of coercion. National guidelines to ensure that donor decision making is made autonomously have recently been described [9]. Although efforts to ensure that donors are knowledgeable about the risk of surgery have been undertaken [9], little is known about the psychosocial risks for donors who are excluded from donor surgery. Some studies suggest that the consequences of not donating may have adverse emotional implications for potential donors [12], [13].

Section snippets

Psychosocial evaluation

Recently, guidelines were described for the psychosocial evaluation of living donors [9], but no guidelines are universally accepted and uniformly applied by all transplant centers. Donors typically meet with a social worker during the course of the evaluation and may be subsequently seen by a psychiatrist or other mental health professional if psychiatric or chemical dependency concerns are raised. The areas usually assessed during the psychosocial evaluation [14] include (1) relationship to

Psychosocial outcomes

Generally, donors experience satisfactory psychosocial outcomes after kidney donor surgery. In the first week after donation, detailed interviews with donors reveal that they experience moderate to severe pain and nausea and are concerned about the recipient's outcome [17]. Most donors experience no depression or anxiety; experience unchanged or improved relationships with the recipients, spouses, family members, and nonrecipient children; and some experience an increase in self-esteem [18].

Nondirected donors

In the last decade, a number of living donor programs have initiated nondirected donation of organs from strangers to individuals waiting on the deceased donor waiting list. Programs evaluating nondirected donors typically report a multistep evaluation process that included telephone screening, psychosocial evaluations, and careful instructions to donors and recipients about communication between donor and recipients after donation [22], [23], [24]. A national conference on nondirected donors

Nonfamily genetically unrelated donors

With increasing waiting times for deceased donor organs, recipients and their families have turned to other strategies for finding compatible donors, including public solicitation through media appeals and Internet Web sites for organ donors [8]. A consensus conference on guidelines for unrelated donors reviewed possible factors that might place a nonfamily member at increased psychosocial risk [9]. The conference attendees determined that the following areas warranted careful attention in the

Paired exchange donors

Kidney paired donation has been described as a potential strategy for increasing organ availability. Recently, the public media reported that 5 donors donated to 5 recipients as part of a kidney donor exchange that began with a nondirected donor donating to one of the recipients on the waiting list whose family member then donated to another individual waiting on the list, which then initiated a series of paired exchanges. Paired exchanges have been described as potentially increasing the match

Living liver donors

In the last decade, living liver donation has been performed in the United States with more than 1600 donors having completed surgery [28]. Living liver donor surgery is a more extensive surgery than living kidney donor surgery with up to 67% of donors reported to have developed postoperative complications [29]. Unrealistic expectations about the outcome of donor surgery and donors with severe medical complications were associated with increased risk for psychiatric complications after donor

Living lung donation

The literature on outcomes in living lung donor psychosocial outcomes is sparse, but one study suggests that there is a reasonable quality of life after donor surgery [33]. In this study, donors had a decrease in exercise tolerance, some had persistent symptoms, and a number felt unrecognized for their contribution. More studies will be needed to understand the experience of lung donors.

Ethical issues

Several ethical concerns need to be considered by clinicians working with living donors. Ensuring that the donors understand the risks and benefits of donor surgery both for themselves and the recipient is critical in the informed consent process. Also, inquiring about the presence of coercion and manipulation by the recipient or other family members may result in the exclusion of a donor who is being coerced. Reviewing the donor's psychiatric and chemical use history will help guide the

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