JENNIFER STEEL (ed.)Living Donor Advocacy2014An Evolving Role Within Transplantation10.1007/978-1-4614-9143-9_15

15. Management of Conflict Between the Independent Living Donor Advocate and the Transplant Team

Roxanne M. Taylor¹

(1)

Maine Medical Center, 19 West Street, 04102 Portland, ME, USA

Roxanne M. Taylor

Abstract

The role of an independent advocate for living donors was suggested at the Amsterdam Forum in 2004. The very definition of the scope of the independent living donor advocate (ILDA) leads itself to the possibility of conflict between the advocate and the other members of the transplant team. The advocate must be independent of the transplant team and yet report to the transplant team. The advocate’s judgment of the suitability of the potential donor is of vital importance in making the final decision of allowing the donation to occur. Although no specific guidelines exist, the living donor advocate must assess the donors’ motivation to donate and whether they are making a well-informed decision. The members of a well-functioning team need to understand the role and responsibilities of each team member and respect each team member’s judgment. An effective team discusses, evaluates, and seeks to make improvements in their process and thereby increases patient safety.

Keywords

Independent living donor advocateAdvocateLiving donorConflictTransplant teams

The role of the independent living donor advocate (ILDA) was created with the express purpose of providing the potential living donor with a contact person, within the formal transplant structure, who was not interested in the outcome of the potential transplant recipient but interested in the donor and donor’s needs. The suggestion of an ILDA was made at the Amsterdam Forum in 2004, although no specific guidelines were provided at that time [1]. Since that time, the United Network for Organ Sharing (UNOS) has defined the ILDA role as one of promoting the best interests of the donor, advocating for the rights of the donor, and assisting the donor in understanding the consent process, the evaluation process, the surgical procedure, medical risks, psychosocial risks, and the need for follow-up care [2]. Again, the exact process of the ILDA functions within the transplant team is not clearly defined.

The role of the ILDA is a unique and unusual one. It is the job of the ILDA to assure that the potential living donor is making a well-informed, autonomous decision. The ILDA is expected to act in an ethical manner in assisting the living donor to make this decision. The ethical principle of non-malfeasance would require that the ILDA (as well as the transplant team) would do no harm to the living donor, either physically or psychosocially. However, because the act of donation can save or significantly enhance the life of another, the beneficence (doing good) of the act is considered by most to be a justification for the donation [3]. One must consider that any donation surgery is putting a healthy individual at risk for surgery and possible long-term health issues of their own for the benefit of someone else. The justification for this must be weighed carefully [4]. There must be respect for the donor and the donor’s decision whether to donate. The ILDA must be sure that the donor’s rights and values are honored and are never considered above those of the recipient’s [3].

The reality is that all health-care professionals want to believe that they are being an advocate for their patient. No matter what our role may be in the patient-care team, health-care professionals have all been taught that the patient’s needs and rights come first. However, communication failures between the health-care team and the patient have at times caused preventable harm to both patients and caregivers. Many communication failures are the result of a hierarchical health-care system, and many patients are unable to express their true feelings and fears to their providers. Improving communication with and within the health-care team improves the quality of care and patient safety [5].

Schwartz describes a patient advocate as one who assists the patient through a clinical process by providing clarification, education, and advice. This person can help a patient steer through a complex system because of the patient’s lack of understanding or knowledge. The patient advocate should be a member of the care team and be a voice for patients when they are not present. The relationship between the patient and the health-care team should be one of care. The concerns and the best interests of the patient are the core of all care decisions. Because of the very nature of the role, the advocate may be adversarial and can promote discord among the care team [6].

Prior to the formation of the ILDA role and the formation of transplant multidisciplinary teams , the physician had the ultimate responsibility of deciding whether a person could be a living donor . The transplant surgeon has a relationship with the donor that must be based in trust that the physician has the health and life of the donor as their sole concern. Delmonico and Surman state that the physician has the responsibility of assessing the donor suitability by assessing their motives for donating, providing the donor with a complete process of informed consent, as well as exercising medical judgment of the risks to the donor [7]. This still holds true, but the current practice is that the overall suitability of the living donor is determined by the transplant team and not by a single practitioner.

No matter the structure of the transplant team , it is still in the educational makeup and nature of physicians to act as their patients’ advocate . It is within their ethical practice to care for their patients’ individual issues and address the root causes of the problems [8]. Physicians should promote healthy lifestyle decisions with a shared process of well-informed patients by discussing all treatment options and acting in the patient’s best interest. Nurses are in a unique position to act as patient advocates because of the amount of time they spend with the patients and their background in patient-centered interdisciplinary care [9].

Both physicians and nurses have been part of the donor’s care team for years, but many times, they were also involved with the recipient’s care as well. Although they may think they are always acting in the interest of the donor, it is hard not to consider the recipient’s often failing health. It would be very easy, but not necessarily intentional, for any member of the transplant team to imply that the recipient’s life or well-being could depend on them getting transplanted. In addition, the donor may feel pressured, explicitly or implicitly, by the physicians and nurses in the transplant team and be afraid of speaking up about an issue of concern. It is also possible that the donor may understand the criteria for acceptance as a living donor and could possibly withhold information from the transplant team, either about their health status or about their motivations to donate.

The formation of the ILDA role has allowed the potential living donor a person with whom, it is hoped, they can communicate—someone who, although a part of the transplant team , is never directly involved with the care of the recipient. In order to reduce the chance of error when dealing with living donors, the transplant team must build a culture of safety and quality and be designed so that system processes ensure that all information is communicated clearly and is understood by the donor throughout the donation process [5].

Disagreement among transplant team members can occur when weighing the medical and psychosocial factors that arise as part of the evaluation process. When an ethical dilemma occurs, there may be varying opinions about the course of action to be taken, and these may involve conflicting personal values, morals, beliefs, and medical judgments. If a disagreement does occur, there needs to be an exploration of all relevant information followed by an open discussion in which all team members can be heard and all acceptable options reviewed [10]. The question is always what is the best decision for the living donor .

In a national survey of ILDAs , the majority had reached a consensus in all cases with their transplant team , with some having to collect more information from the potential living donor or to discuss the case with an outside body to reach a final decision. Most ILDAs were part of the multidisciplinary selection committee, but some did not attend or only occasionally attended such meetings. Some were not even aware that this should be part of their role. There was some agreement on the duties of the ILDA role. The education of the ILDAs varied greatly, and the career backgrounds ran from medical professionals to members of hospital ethics committees to the clergy [11]. With little consistency in defining an ILDA, there is little doubt as to why there is confusion and sometimes conflict between the ILDA and the other members of the transplant team.

Possible Conflict Scenarios

A medical and surgical risk for the living donor varies from person to person and depends on their age and previous medical history. Surgical risks exist with any type of surgery and, although the mortality rate is low (0.03 %), deaths have occurred second to pulmonary emboli, infection, and bleeding. Post donation, future medical risks for living donors can be directly related to lifestyle health decisions, such as smoking and obesity, loss of the single remaining kidney from trauma or cancer, hypertension, and diabetes. Women may be at a higher risk of developing diabetes if they experienced gestational diabetes during pregnancy. Donors may have family histories of genetically transmitted kidney diseases that need to be fully explored to determine any degree of future problems [12]. The younger the donor, the more difficult it becomes to be able to fully predict the future health and risk for the donor. Certain minority groups may be at a higher risk for developing hypertension and diabetes [13]. It is the surgeon’s and nephrologist’s responsibility to assess the potential medical risk for each donor.

The decision could be made by the transplant physicians that a donor should not donate because the future risk to their health is deemed too great. This may be a straightforward decision for the physicians involved but may not be easy for the ILDA. There are many reasons why a donor may feel it is worth the risk to donate, and the ILDA must explore these reasons with the donor. The donor may be a parent, and their child’s health will be much more important to them than their own. The recipient may be gravely ill, and the donor may feel it worth the risk of the surgery to save the life of another. In one study, it was determined that as many as 74 % of donors were willing to accept a risk of death greater than the current 1 in 3,000; in fact, 29 % were willing to take an almost 1/2 risk of their own lives in order to save someone else [14]. There should be written policies and practices that outline the short- and long-term risks for living donors that would allow the transplant team reasons to decline a donor if the medically acceptable criteria are not met and also allow the donors to make a free and informed decision to donate if they are medically suitable [13]. Using the same scenario, the ILDA may have an ethical dilemma in accepting donors that are medically marginal, fearing that the donor is putting himself at greater long-term risk. The donor may be willing to take a higher health risk that the ILDA does not feel is reasonable.

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