The Independent Living Donor Advocate: A Guidance Document From the American Society of Transplantation's Living Donor Community of Practice (AST LDCOP)

• Published in: American journal of transplantation Vol. 15; no. 2; pp. 518 - 525
• Main Authors: Hays, R. E., LaPointe Rudow, D., Dew, M. A., Taler, S. J., Spicer, H., Mandelbrot, D. A.
• Format: Journal Article
• Language: English
• Published: United States Elsevier Limited 01.02.2015
• Subjects: allied health/nursing; clinical research/practice; Continuity of Patient Care - standards; donors and donation: donor evaluation; donors and donation: living; Educational Status; ethics; ethics and public policy; Humans; Independent Living - standards; Informed Consent - standards; kidney transplantation/nephrology; Living Donors - education; Living Donors - psychology; Medicaid; Medicare; Mental Competency - standards; Organ Transplantation - education; Organ Transplantation - psychology; Patient Advocacy - standards; patient education; Self-Help Groups - standards; social sciences; Society; Transplants & implants; United States; United States; donors and donation: living; allied health/nursing; ethics and public policy; clinical research/practice; kidney transplantation/nephrology; patient education; social sciences; donors and donation: donor evaluation; ethics
• ISSN: 1600-6135; 1600-6143
• DOI: 10.1111/ajt.13001

The independent living donor advocate (ILDA) serves a mandated and supportive role in the care of the living organ donor, yet qualifications and role requirements are not clearly defined. Guidance comes from Centers for Medicare and Medicaid Services (CMS) Conditions for Transplant Center Participation and interpretive guidelines, Organ Procurement and Transplantation Network (OPTN) Policy and CMS and OPTN site surveys, yet interpretation of regulations varies. Herein, the AST Living Donor Community of Practice (LDCOP) offers seven recommendations to clarify and optimize the ILDA role: (a) the ILDA must have a certain skill set rather than a specific profession, (b) the ILDA must be educated and demonstrate competence in core knowledge components, (c) the ILDA's primary role is to assess components of informed consent, (d) centers must develop a transparent system to define ILDA independence, (e) the ILDA should have a reporting structure outside the transplant center, (f) the ILDA's role should be integrated throughout the donor care continuum, (g) the ILDA role should include a narrow “veto power.” We address controversies in ILDA implementation, and offer pathways to maximize benefits and minimize limitations of approaches that may each meet regulatory requirements but confer different practice benefits. We propose a research agenda to explore the impact of the ILDA. The American Society of Transplantation Living Donor Community of Practice offers seven recommendations to clarify and optimize the Independent Living Donor Advocate role, address controversies in implementation, and offer pathways to maximize benefits and minimize limitations of differing approaches.