The Independent Living Donor Advocate

Living donation began in 1954 and has become more commonplace in recent years due to laparoscopic techniques that allow donors to recover quickly and spend fewer days in the hospital. Despite these advances, living donation remains a serious decision. To promote safe evaluation and care for living donors, federal regulations require transplant programs to appoint an independent living donor advocate (ILDA) to support these patients. However, many in the transplantation community have questions about what the ILDA role entails and how to operationalize it. To clear up the confusion, I have invited Rebecca Hays, chair of the AST’s Live Donor Community of Practice (LDCOP) to blog about recent steps the AST has taken to address the role of the ILDA.

Rebecca Hays, MSW -- Live Donor Social Worker/ILDA, University of Wisconsin, on behalf of the AST Live Donor Community of Practice (LDCOP)

Nearly a decade ago, CMS and the OPTN mandated the role of an ILDA to participate in the care of all prospective living donors. Foremost, the ILDA is an advocate for patient autonomy and readiness, and a safeguard for aspects of informed consent unique to the living donor population.

In practice, the ILDA role must achieve a balance -- simultaneously independent of recipient services and pressures around transplant volumes, yet also knowledgeable enough about transplantation to promote donor understanding of risks and benefits.

This balance is challenging to achieve -- but is also explicitly mandated by CMS and the OPTN. With varied interpretation of the role requirements, members of the transplant community have struggled to define the scope of ILDA practice.

The AST Live Donor Community of Practice (LDCOP) has undertaken several initiatives related to the role of the ILDA:

Building standardized, high-quality ILDA training

In May 2015, the LDCOP launched a stand-alone ILDA webinar series (the first of its kind) to provide high quality education for ILDAs -- long identified as a high priority need¹. The multidisciplinary planning committee, with input from CMS and the OPTN, built content with 3 primary goals:

1. To define the ILDA role and regulatory requirements
2. To provide a bedrock of knowledge about transplant, living donation, and ethics
3. To offer clinical training in specifics of ILDA role implementation

The series airs monthly through November, is archived online, and has surpassed our initial goals for participation (in fact, with 150+ attendees each month, our numbers are triple what we anticipated). Down the line, the goal is to create an ILDA certification program.

Improving understanding of the ILDA role and outlining strategies for meaningful implementation

Over several years, the LDCOP's ILDA Workgroup (a multidisciplinary group of experts in donor clinical practice, research, and policy-making) developed guidance recommendations for ILDA role implementation, which were in turn endorsed by the AST Board and published in the AJT. This workgroup achieved consensus that many current approaches to the ILDA role can both meet regulatory requirements and remain appropriate to different centers’ needs for living donor care. That said, the group offered the following recommendations to improve the understanding and value of the role at the individual center level:

1. ILDA must have a certain skill set (not come from a specific discipline)
2. ILDA must be educated and demonstrate competence in core knowledge components
3. The primary role of the ILDA is to assess components of informed consent
4. Centers must develop a transparent system to define ILDA independence
5. ILDA should have a reporting structure outside the transplant center
6. The role of the ILDA should be integrated throughout the donor care continuum
7. ILDA should have a narrow "veto power" defined around informed consent components

Recognizing benefits and limitations to various ILDA approaches

The ILDA's relationship with the rest of the donor care team is open to interpretation within current regulatory guidance. Some argue the benefits of an ILDA fully incorporated into the donor care team, describing a collaborative approach focused on prospective donor interests throughout the donation process. Others argue that this dilutes the independence of the ILDA, and increases the risk of conflict of interest. The ILDA workgroup identified pros and cons to each approach and encouraged programs to choose consciously, adapting structure and implementation to reduce the limits of their chosen approach:

• For the embedded ILDA donor clinician (such as a donor social worker/ILDA or a donor physician/ILDA), the risk of conflict of interest may be reduced with narrow ILDA role identification, separate documentation, and description of the dual role to prospective donors.
• Conversely, an ILDA independent of the transplant center (such as a chaplain or a primary care consultant) will require additional training, and perhaps supervision, to ensure competency in the required knowledge base and understanding of risks for specific living donor candidates; it may also be more challenging to integrate this ILDA through the donor care continuum.

Still to come

The LDCOP continues to support a research agenda to identify the ILDA implementation strategies that create measurable improvements in living donor and recipient trust in donor care, an informed consent process, and satisfaction with care. We also encourage process improvement research to identify the impact of various ILDA approaches on transplant center resources, donor candidacy criteria, and quality of care.

Interested in participating? I encourage you to join the LDCOP to help us further these initiatives.

The following AST members contributed to the projects described above:

• ILDA workgroup: Mary Amanda Dew, Rebecca Hays, Dianne LaPointe Rudow, Didier Mandelbrot, Helen Spicer, Sandra Taler
• ILDA webinar series planning committee: Marian Charlton, Matthew Cooper, Jami Hanneman, Rebecca Hays, Ben Hippen, Dianne LaPointe Rudow, Arthur Matas, David Serur, Ellen Shuklman, Jennifer Steel
• Additional ILDA webinar series faculty: Robert Brown, Cheryl Jacobs, Liz Pomfret
• AST staff: Kristin Burke and Randy Young

¹Hays RE et al. AJT 2015; LaPointe Rudow D et al. AJT. 2015 Feb 3; Steel JL et al. AJT. 2012)