Independent Living Donor Advocate

SUMMARY

Under the general supervision of the Chaplaincy Program leadership, the Independent Living Donor Advocate (ILDA) functions as an advocate and resource for the Transplant Program's living kidney donor candidates throughout referral, evaluation, surgery and follow-up (the donation process). The ILDA ensures that the donor's rights are protected, that their best interests are promoted, and that all questions and concerns raised during the donation process are addressed.

The donor's decision is respected and supported, and the process is fully informed and free from coercion. This position is subject to regulatory requirements from CMS (Medicare), UNOS (United Network for Organ Sharing), and TJC (The Joint Commission).

Brown University Health employees are expected to role model the organization’s values of Compassion, Accountability, Respect, and Excellence. Employees are also expected to demonstrate the core Success Factors:
Instill Trust and Value Differences, Patient and Community Focus, and Collaborate.

The independent living donor advocate represents and advises the donor candidate throughout the donation process with the goal of protecting their rights and promoting their best interests. The duties include, but are not limited to, the following:

• Upon a candidate’s initial referral or contact with the Transplant Program, the ILDA will contact the potential donor, introduce themselves, explain their role, and briefly describe the donor evaluation process so the potential donor understands what to expect and can ask preliminary questions. The ILDA documents notes from this and all future interactions with the donor in the transplant program record.
• On the day of the initial evaluation appointment, the ILDA will actively participate in the evaluation and informed consent process with the Living Donor Coordinator and the prospective donor. The ILDA will then meet in person with the potential donor to further discuss informed consent areas, including risks, and the donor’s motivation to donate a kidney to ensure that there are no concerns regarding coercion.
• The ILDA ensures that a comprehensive psychosocial evaluation of the donor candidate has been performed by a licensed mental health professional on behalf of the transplant team. During the evaluation process, the ILDA maintains ongoing communication with the Living Donor Coordinator and discusses any concerns or issues with the donor team.
• The ILDA contributes to the transplant team’s assessment of the potential donor by providing information about the donor’s understanding of donation and notes any reservations the donor may have about proceeding with evaluation or donation for transplant.
• The ILDA reviews the donor’s right to confidentially opt out at any time.
• Once the donor candidate is cleared for donation and a surgery date is scheduled, the ILDA checks how they are feeling about their decision and the workup process, confirming that all the information needed to make a decision to donate has been provided, that the donor has considered risks thoughtfully, and that a supportive social network exists.
• After donation surgery, the ILDA meets with the living donor during hospitalization to determine how they are feeling after surgery and about their decision to donate a kidney, and to identify any issues or concerns that need to be communicated to the transplant team.
• The ILDA is available to the donor throughout the recovery process, including a 6‑week post‑hospitalization call to check emotional and psychological status.
• When questions or concerns are raised by the donor at any point in follow‑up, the ILDA responds promptly and proactively to resolve the situation and/or communicate information to the transplant team.
• The ILDA attends the bi‑weekly transplant multidisciplinary Living Donor Committee meetings and provides information, input, and notes concerns regarding any potential or past donors.
• The ILDA stays current in knowledge applicable to this position, including transplantation and living organ donation, informed consent, medical ethics, UNOS/OPTN policy and CMS requirements.
• Performs other duties as assigned.