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The independent living donor advocate: an essential role for living kidney donation.

The first successful living donor transplant was performed in 1954 by Dr. Joseph E. Murray and colleagues at Peter Bent Brigham Hospital (now Brigham and Women's Hospital) in Boston, Massachusetts. The transplant was between 23-year-old identical twins, and the recipient enjoyed an active life for 8 years before dying from causes unrelated to the transplant. His donor lived into his '70s, and four days before his death, celebrated 56 years of life after his historic kidney donation (Transplant Living, 2014a). Thousands of transplants have been performed in the last 60 years, and while some things have not changed, many aspects of organ donation and transplantation have.

For many years, the same team that provided care for the recipient also oversaw the care of the living donor: performing the evaluation, counseling and education during hospitalization, and the follow-up care. The question arose as to whether the same team could be completely objective in their actions (Did the recipient's need for an organ unconsciously skew the healthcare team's imperative to ensure the donor's wishes, thoughts, and rights were protected?). While one would hope that healthcare professionals could and would prioritize the needs of both parties, can humans juggle competing priorities, especially for a patient who has a compelling need for an organ transplant? This practice began to change at the turn of this century.

The Live Organ Donor Consensus Group, consisting of 100 professionals from multiple disciplines in the transplant community, met in 2000. Their mission was to recommend practice guidelines for physicians and healthcare planners concerned about the well-being of living organ donors (Abecassis et al., 2000). The consensus group identified certain elements that should be present for a person to consent to live donation, understanding that the benefits must outweigh the risks for both the donor and recipient.

In April 2004, the Ethics Committee of the Transplantation Society (2004) convened more than 100 experts in transplantation from more than 40 countries. They were charged to develop an international consensus for the standard of care and develop a position statement to affirm the responsibility the transplant community has for the living kidney donor. Their report recommended that transplant programs have an advocate for living donors. The purpose was to avoid any conflict of interest between living donor and recipient, real or perceived, and the healthcare professionals involved in their care (Ethics Committee of the Transplantation Society, 2004; Monaco & Morris, 2005).

The Centers for Medicare and Medicaid Services (CMS) published the revised "Conditions of Participation for Transplant Programs" in March 2007 (CMS, 2007). The conditions include that a transplant center must identify an individual independent donor advocate or an independent living donor advocate team so that the rights of a potential or actual donor are protected (CMS, 2007).

In September 2007, the United Network for Organ Sharing (UNOS) and the Organ Procurement and Transplantation Network (OPTN) declared that transplant centers must have an independent living donor advocate or establish an independent donor advocate team to represent the donor's interests (Choudhury, Jotterand, Casenave, Smith-Morris, 2014; Health Resources and Services Administration [HRSA], 2007). The living donor advocate or advocate team does not actively participate in the medical or psychosocial evaluation of the potential donor, and does not play a part in the determination of that person's candidacy or eligibility.

During the earlier years of transplantation, living donors were limited to direct blood relatives. Through the years, immunosuppressive strategies have become more effective. This, coupled with the small number of available donors as compared to the increasing number of people awaiting a transplant, has expanded the living donor candidate pool to include living people who are unrelated. Living unrelated donors can include a friend, friend of a friend, or even an altruistic "Good Samaritan" donor who simply wants to help someone in need. Recipients or even recipient families have used the Internet and social media to search for such a donor. The living related donor now does not have to be an immediate relative, but may be a more distant relative, such as a cousin, aunt, or uncle.

The motivation to donate differs somewhat among the various types of living donors; a sense of family typically motivates related live kidney donors as compared to unrelated donors, who are motivated more by a sense of altruism (Bosek & Sargeant, 2012). There may also be a sense of obligation by a family member, and that may raise some issues (which will be discussed later) (Frazier, 2014). A spouse, while not a blood relative, may be motivated by the same sense as family members.

Another factor that has increased the pool of individuals willing to donate a kidney is the change in the surgical procedure for donation. The living donor nephrectomy was traditionally performed through an open approach that required a large flank incision, causing the donor more pain than the recipient, and requiring several months for convalescence. The ability to perform the living donor nephrectomy laparascopically in the late 1990s has led to shorter hospital stays, decreased post-operative requirements for pain management, and the ability to return to work as much as two weeks earlier than when the procedure is open (Fabrizio, Ratner, Montgomery, & Kavoussi, n.d.). Advances in surgical techniques have made the prospects of living kidney donation less intimidating.

The Donor Advocate Role

The requirement for a person or a team, independent of the recipient transplant team, to assess, consider, and protect the rights of a potential donor is a reality in the 21st century. The discussion that began in 2000 at the Live Organ Donor Consensus Group arrived at the following conclusion about the role of the independent living donor advocate.

"The person who gives consent to be a live organ donor should be competent, willing to donate, free from coercion, medically and psychosocially suitable, fully informed of the risks and benefits as a donor, and fully informed of the risks, benefits, and alternative treatment available to the recipient. The benefits to both donor and recipient must outweigh the risks associated with the donation and transplantation of the living donor organ" (Abecassis, et al., 2000, p. 2919).

Abecassis and colleagues (2000) further identified critical elements of informed consent to donate. These include an understanding of the procedure, and disclosure that fully includes the potential risks and benefits to the donor and recipient so the potential donor understands there are likely other options for the recipient, and the donor's organ donation is not the only form of renal replacement therapy. Other essential elements include the voluntary nature of the act of donating (i.e., freedom to choose to donate or decline), and documentation of the consent. Simply stated, the primary focus of the advocate is to focus on and act in the best interest of the donor alone.

What is an "advocate?" An advocate is "a person who publicly supports or recommends a particular cause or policy; a person who pleads on someone else's behalf" (Oxford University Press, 2014). The verb, "advocate," is defined as "publicly recommend or support" (Oxford University Press, 2014). Thus, the advocate serves as a champion or proponent, to act as a spokesperson, when needed, for the living donor.

The term "independent" does not mean that the living donor advocate or advocate team has to be a separate entity from the transplant program. The advocate may be part of a transplant program, work in another part of the same organization, work elsewhere, or even be a volunteer. It does mean that the advocate functions independently of the transplant team in supporting the donor to ensure there is no conflict of interest between the donor and recipient, and that the donor's wishes will be put ahead of the recipient's interests if there is a conflict (CMS, 2008). The advocate cannot be involved with transplantation activities on a regular or routine basis in order to maintain this distance and objectivity (CMS, 2007, 2008). Rather, the advocate or advocate team is focused upon protecting the rights of the donor, promoting the donor's interests, advising the donor, and ensuring that the decision to donate is free from any coercion (Steel et al., 2012).

Organ purchases are illegal in the United States (National Organ Transplant Act, 2008), so it is imperative to ensure the absence of coercion, remuneration, or other incentives for donation. Coercion, remuneration, or incentives may be difficult to validate. As an example, if the donor is vague in his or her description of the relationship with the potential recipient or changes the description of that relationship, this should generate questions about the motivation to donate and whether coercion, remuneration, or incentives may be involved (Stone, 2013). These concerns must be conveyed by the advocate or advocate team to the donor team for further exploration.

Every transplant center in the United States should have an advocate or advocate team who participates in the living donor screening or evaluation process. How this is achieved by each transplant program is determined by the individual programs.

Independent Living Donor Advocate or Donor Advocate Team?

The person or persons who will advocate and support the donor can take a variety of forms, with no standard method, approach, or composition; CMS simply requires that either an advocate or advocate team be in place (CMS, 2007). Demonstrated knowledge and understanding of living organ donation, transplantation, medical ethics, and informed consent are required elements for the advocate or advocate team, although there are no stipulations about any particular discipline (CMS, 2008). Many programs have a single living donor advocate (perhaps with another person[s] or "back-up" available). A national survey of advocates revealed that of those responding, the majority of advocates were nurses, followed by social workers (Steel et al., 2012). The disciplines represented in a donor advocate team may include a nurse, internal medicine physician, transplant coordinator, nurse practitioner, medical social worker, psychiatrist, financial coordinator, inpatient nursing supervisor, nephrologist, surgeon, or even a recipient of a transplant. Some programs may include a member of the clergy as the advocate or as part of the advocate team. Some donors, however, may not identify with clergy, or their religious beliefs may differ from that of the clergy member (Rudow, 2009). Others have suggested that ethics consultants should not be the advocate or part of the advocate team. Ethicists may be involved in meetings with the transplant service on an ongoing basis, or more importantly, may be needed for consultation if there are unresolved issues regarding the prospective living organ donor (Bosek & Sargeant, 2012; Steel et al., 2012).

While there is no standardized curriculum to prepare individuals or teams for the advocate role, and because there are no consistent disciplines, NATCO developed a training manual for advocates (NATCO, 2012). It was created in collaboration with the National Kidney Foundation's (NKF) Council of Professional Living Donor Advocates (NKF, 2013) and the UNOS Living Donor Committee (Transplant Living, 2014b).

Advocate Interventions

Examples of the types of encounters and interventions by the advocate or advocate team can vary widely, as there are currently no practice guidelines (Choudhury et al., 2014; Steel et al., 2012). All interactions with the advocate and advocate team are confidential within the donor team and are not shared with the recipient team. The timing of the encounter may vary depending upon the transplant program's protocol or donor needs. It may be beneficial if an interaction occurs later in the evaluation process to ensure the donor is well informed, is prepared for donation, and understands informed consent. In part, this encounter is to make sure the transplant program is fulfilling its obligations to adequately educate the donor about the benefits as well as the risks of organ donation. If an educational deficit is identified, this is communicated to the living donor coordinator or other appropriate person to convey the need for further education. If, for example, a second language is involved, the transplant team must provide an interpreter to ensure the organ donor understands all aspects of organ donation.

The advocate or advocate team makes sure the donor understands the risks for transplant failure from rejection or technical problems. Has the donor considered this possibility and how he or she would feel? In addition, the donor must be made aware of the potential need for the donor to require renal replacement therapy at some point in the future, albeit a very remote possibility (Hassan et al., 2009; Monaco & Morris, 2005). In fact, studies have shown that the risk for people who are carefully screened and donate kidneys have similar, if not slightly lower, risk of developing end stage renal disease than those in the general population (Ibrahim et al., 2009; Monaco & Morris, 2005).

It is important that the donor understands and accepts the need for regular follow up at designated time intervals (i.e., from two to six weeks post-operatively [according to center specific protocol], then at six, 12, and 24 months post-donation, with two years post-donation as the minimum requirement) (OPTN, 2014; OPTN Living Donor Committee, n.d.). UNOS requires this follow up, including reports to the donor registry to ensure the donor team continues to monitor the donor's renal function and overall health. The advocate or advocate team reviews the schedule of follow-up appointments with the donor and informs the donor team if the donor does not accept or understand the need for this follow up (Stone, 2013). For example, a young person who has never experienced any health issues may not appreciate the need for follow up post-donation, so the donor team must address this lack of understanding. Consideration must be made for whether this unease about adherence to follow up could lead to deferring or even denying the donation, for concern of the donor's long-term well-being (Stone, 2013).

The advocate or advocate team must share any concerns about coercion with the donor team. If a donor feels pressured, for example, by family members or loved ones to donate, the medical alibi may come into play. Because of the nature of the relationship between the prospective donor and recipient, the donor may not be able to disclose the reasons for not proceeding with the donation. Such disclosure could put the relationship at risk or cause conflict between them (Frazier, 2014). The risk of coercion must be investigated further to establish the legitimacy of this concern. A social worker, psychologist, psychiatrist, ethicist, or other neutral party may be consulted for further assessment. In the event of coercion or if the donor simply changes his or her mind and opts out of donation, the advocate or advocate team and the donor team provide a medical alibi and declare that the donor is no longer a suitable candidate for donation. No further explanation is provided to the recipient or recipient team. The donor can opt out at any time in the process, up to and including in the operating room. To paraphrase one surgeon, "As long as I can hear you, you can change your mind."

The donor should be told if the advocate has veto power in the evaluation process (Steel et. al., 2013). While many advocates do not have the authority to determine if the donation is to occur, it is the advocate's responsibility to convey any concerns to the donor team for them to address.

The advocate reviews the support that the donor will have post-hospitalization, both personally and financially. The advocate must explore whether the donation will create a financial hardship for the donor and/or the donor's family. For example, has the potential organ donor accrued paid time off from work so that finances will not be a burden? Otherwise, there are a few resources to offset the costs the donor may incur. In an effort to encourage organ donation, the Organ Donation and Recovery Improvement Act was passed by the United States Congress (United States Congress, 2004). In part, it provides for reimbursement for travel and subsistence expenses for some donors deemed eligible, although it is a rather extensive process. For example, Stone et al. (2013) discuss one potential donor who was a single parent with several small children. She would have experienced such a hardship if she was out of work for more than one week, and therefore, was not a suitable donor. She was ruled out with the initial screening, which is always beneficial for all parties to find this out as early in the process as possible. A full discussion of funds available to living donors is beyond the scope of this article, but each transplant center's living donor coordinator and/or financial coordinator will have knowledge of these resources.

Some employers are very supportive of employees being organ donors and grant whatever time is needed and make provisions for "light duty" or working from home, if appropriate. An example of this was the case of a donor who lived in a different state from the transplant center. Her director offered her a car from the company's fleet to use to travel between her home and the out of state transplant center. She was given the opportunity to work from home post-donation as she felt she was able to do so.

As for personal support, the donor will need assistance after discharge as with any surgery including transportation to follow-up visits, etc. If people have difficulty asking for or accepting help from others, this could represent a barrier to the donor's recuperation and must be dealt with before proceeding with donation.

The frequency of contact between the donor and advocate or advocate team varies widely. The contact may be limited to pre-donation assessment and a one-time post-donation encounter during the hospitalization. The post-donation interaction is to assess the donor's experience as to how well he or she was prepared for the actual donation, whether pain management is effective, if preparation for discharge is adequate, and to ensure there is sufficient support after discharge. Most advocates and advocate teams followed donors for less than a year and are not part of the required two-year follow up by UNOS (Steel et al., 2012). Donors are queried about their experience of donation, and if the donor identifies deficiencies in that experience, these are shared with the donor team as an opportunity for improvement.

Donor Expectations of the Advocate

Rudow (2009) spoke with donors more than three months following donation and contact with the advocate and asked what they expected from the advocate or advocate team. Responses varied, and included information about donation and reassurance the donor would be okay, desire not to be treated like a cadaver, the need to have the donor's own healthcare team, and reassurance the donor is healthy enough to donate.

Summary

Living donors are often viewed as heroes because they are voluntarily undergoing an unnecessary surgical procedure to help another person. The regulatory requirement for an independent living donor advocate or advocate team was implemented in 2007 to avoid any inadvertent or unconscious conflict of interest between the donor and recipient, and their respective healthcare teams. The role of the advocate or advocate team is to ensure that a prospective living donor understands the inherent risks of organ donation, as well as the benefits to both donor and recipient. This includes other renal replacement therapy options accessible to the recipient other than transplant using a kidney from this particular donor. Informed consent is at the heart of this process so that the donor truly understands all the ramifications to which he or she is consenting. The advocate or advocate team independently assesses the donor's education in preparation for donation. This is to ensure the donor is free of coercion and truly independent with the intent to donate, donation does not present a financial hardship, and there will be support for the donor post donation. The donor accepts the need for medical follow up through two years post-donation, and the option of a medical "out" or "alibi" can be exercised at any time, up to and including in the operating room. The advocate or advocate team can be contacted at any time with concerns or questions.

The practice discipline of the advocate or members of the advocate team is not specified in the regulations requiring the position. In the absence of practice guidelines, the manner in which this regulatory requirement is accomplished varies widely among transplant programs. There have been calls to establish practice guidelines to ensure that the rights of the person donating a kidney are consistently protected, respected, and maintained (Steel et al., 2013).

The role of the advocate and advocate team is profound. It can best be summarized by a potential living donor who, when asked to describe his understanding of the role of the advocate, replied, "You're looking out for me."

Goal

Discuss the benefits of a living kidney donor advocate or advocate team to support donors for living donor transplants.

Objectives

1. Describe the former practice of screening and preparing potential living kidney donors prior to the implementation of the requirement for an independent living donor advocate or advocate team.

2. Explain the role of the independent living donor advocate or advocate team.

3. Describe a medical "out" or medical "alibi," and when it can be exercised by the living donor.

References

Abecassis, M., Adams, M., Adams, P., Arnold, R.M., Atkins, C.R., Barr, M.L., ... Younger, S. (2000). Consensus statement on the live organ donor. Journal of the American Medical Association, 284(J72), 2919-2926.

Bosek, M.S.D., & Sargeant, I.L. (2012). Living kidney donor advocacy program: A quality improvement project. JONA's Healthcare Law, Ethics, and Regulation, 74(1), 19-26.

Centers for Medicare & Medicaid Services (CMS). (2007). Medicare program: Hospital conditions of participation: Requirements for approval and re-approval of transplant centers to perform organ transplants. Final rule. 42 CFR Parts 405, 482, 488 and 498. Federal Register, 72(61), 15198-15280. Retrieved from http:// www.cms.gov/Regulations-andGuidance/Legislation/CFCsAnd CoPs/downloads/trancenterreg2007. pdf

Centers for Medicare & Medicaid Services (CMS). (2008). Advance copy - Organ transplant interpretive guidelines. Ref: S&C 08-25. 1-110. Baltimore, MD: Author. Retrieved from http:// www.cms.gov/Medicare/ProviderEnrollment-and-Certification/ SurveyCertificationGenlnfo/down loads/SCLetter08-25.pdf

Choudhury, D., Jotterand, F., Casenave, G., & Smith-Morris, C. (2014). Independent donor ethical assessment: Aiming to standardize donor advocacy. Progress in Transplantation, 24(2), 163-168.

Ethics Committee of the Transplantation Society. (2004). The consensus statement of the Amsterdam Forum on the care of the live kidney donor. Transplantation, 75(4), 491-492.

Fabrizio, M.D., Ratner, L.E. Montgomery, R.A., & Kavoussi, L.R. (n.d.). Laparoscopic live donor nephrectomy. Retrieved from http://urology.jhu.edu/ surgical_techniques/nephrectomy/ index.html

Frazier, T.M. (2014). Donor's right and method of opting out. Retrieved from https://www.livingbank.org/courses/ donor-s-right-and-method-of-opting-out

Health Resources and Services Administration (HRSA). (2007.) 0PTN/ UNOS approves new bylaws for programs performing living donor kidney and liver transplants. Baltimore, MD: Author. Retrieved from http://optn. transplant.hrsa.gov/PublicComment /pubcommentPropSub_247.pdf

Ibrahim, H.N., Foley, R., Tan, L, Rogers, T., Bailey R.F., Guo, H., ... Matas, AJ. (2009). Long-term consequences of kidney donation. New England Journal of Medicine, 360, 459-469. doi:10.1056/NEJMoa0804883 Retrieved from http://www.nejm. org/doi/full/10.1056/NEJMoa08048 83

Monaco, A.P., & Morris, PJ. (2005). Care of the live kidney donor: Consensus on the ultimate gift. Transplantation, 79(S2), S51-S66. Retrieved from http://www.kidneyregistry.org/ docs/ amsterdam_guidelines.pdf

NATCO. (2012). Kidney independent living donor advocacy training documentation manual. Retrieved from http://www. natcol.org/Education/documents/ ILDATManual_January2012_FINA L.pdf

National Kidney Foundation (NKF). (2013). Council of professional living donor advocates. Retrieved from http://www.kidney.org/transplanta tion/livingdonors/cplda.cfm

National Organ Transplant Act. (2008). United States Code Title 42--The public health and welfare chapter 6A--Public Health Service subchapter II--General powers and duties Part H--Organ Transplants Sec. 274e--Prohibition of organ purchases. Retrieved from http://www.gpo.gov/fdsys/pkg/USC ODE-2010-title42/pdf/USCODE-2010-title42-chap6A-subchapII-partH-sec274e.pdf

Organ Procurement Transplant Network (OPTN). (2014). OPTN policies. Retrieved from http://optn.trans plant.hrsa.gov/ContentDocuments/ OPTN_Policies.pdf#nameddest= Policy_14

Organ Procurement Transplant Network (OPTN) Living Donor Committee, (n.d.) Guidance for developing and implementing procedures to collect post-donation follow-up data from living donors. Retrieved from http://optn.trans plant.hrsa.gov/ContentDocuments/ Guidance_Post_Donation_Donor _Follow-Up.pdf

Oxford University Press (2014). Advocate. Retrieved from http://www.oxforddictionaries.com/us/definition/ameri can_english/advocate

Rudow, D.L. (2009). The living donor advocate: A team approach to educate, evaluate, and manage donors across the continuum. Progress in Transplantation, 75(1), 64-70. Retrieved from http://www.docm. com/p-467962334.html

Steel, J., Dunlavy, A., Friday, M., Kingsley, K., Brower, D., Unruh, M., ... Humar, A. (2012). A national survey of independent living donor advocates: The need for practice guidelines. American Journal of Transplantation, 72,2141-2149. doi: 10. 1111/j.1600-6143.2012.04062.x

Steel, J.L., Dunlavy, A., Friday, M., Kingsley, K., Brower, D., Unruh, M., ... Humar, A. (2013). The development of practice guidelines for independent living donor advocates. Clinical Transplantation, 21, 178-184. doi: 10.1111/ctr.12112

Stone, S. (2013). When the living donor advocate says "no" [Webinar], Retrieved from http://www.livingbank. org/courses/when-the-living-donor-advocate-says-no

Transplant Living. (2014a). History of living donation. Retrieved from http:// www.transplantliving.org/livingdonation/facts/history/

Transplant Living. (2014b). Living donation. Retrieved from http://transplantliving.org/living-donation/

United States Congress. (2004). Public Law 708-216. Organ Donation and Recovery Improvement Act. Retrieved from http ://livingdonorassistance. org/Documents/Public%20Law%20 108216_Organ%20Donation%20 Act.pdf

Karen C. Robbins, MS, RN, CNN, is an Independent Living Donor Advocate, Hartford Transplant Program, Hartford Hospital, Hartford, CT; Associate Editor of the Nephrology Nursing Journal; a Past President of ANNA; and a member of ANNA's Colonial Chapter. She may be contacted directly via email at kcr_nnj@yahoo.com

Statement of Disclosure: The author reported no actual or potential conflict of interest in relation to this continuing nursing education activity.

Note: Additional statements of disclosure and instructions for CNE evaluation can be found on page 574.
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Title Annotation:Continuing Nursing Education
Author:Robbins, Karen C.
Publication:Nephrology Nursing Journal
Geographic Code:1USA
Date:Nov 1, 2014
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