CMS SOM App. X, Tag X-121

Advocate Team. The transplant program that performs living donor transplantation must

identify either an independent living donor advocate or an independent living donor

advocate team to ensure protection of the rights of living donors and prospective living

donors.

Guideline §482.98(d)

An independent living donor advocate role can consist of one individual or a team of individuals.

Throughout this guidance, ILDA or ILDA team is referred to interchangeably as ILDA.

Advocation for the wishes and challenges faced by a living donor is instrumental in ensuring the

protection of rights for each potential living donor.

If a transplant program performs living donation, it must assign a living donor advocate or

advocate team to each potential donor that is being evaluated for donation. The transplant

program must ensure the ILDA remains independent of transplant program operations. Each

potential donor must be informed of the ILDA assigned to them and how their role is integrated

with donor’s evaluation process, i.e. promoting the rights of the donor through discussions and

assessments of the donor’s comprehension of the aspects of organ donation.

“Independent”means that the ILDA individual(s) function independently from the transplant

team to avoid conflicts of interest, such as pressures for increasing a program’s transplantation

rates. An ILDA is not required to be employed or supervised by someone outside of the hospital.

The transplant program must ensure the independent operating ability of the ILDA, which may

be achieved by incorporating the following factors:

a. Independently operates: The position must allow the ILDA to provide independent

representation to the potential LD/LD. The transplant program must create a structure for

the ILDA that allows independent evaluations and avoidance of conflict of interest.

b. Informed consent: The job description of the ILDA must outline clear expectations that

their position is to represent and advise the donor; and to promote his/her interests. This

ILDA must be focused on ensuring that the rights of potential LDs/LDs are protected and

that the potential LD’s/LD’s decision is informed and free from coercion.

c. Chain of command: While the ILDA performs their functions independent of the

transplant team, there must be a chain of command for the communication of findings

and/or donor needs based on their discussions and assessments. The ILDA has the ability

to file a complaint/grievance with a third party if the ILDA believes that the rights of the

potential LD/LD are not being properly protected.

Note: To facilitate open discussions and avoid any bias towards a potential donor’s decision to

donate, the potential transplant recipient should not be present during any discussion between the

ILDA and the potential donor.