On June 21, 2024, MOHAN Foundation and Network and Alliance of Transplant Coordinators (NATCO) organised a masterclass on, “Independent Living Donor Advocacy,” for its employees and NATCO members.
Independent Living Donor Advocacy (ILDA) focuses on supporting individuals who choose to donate organs or tissues while they are still alive. These advocates work to ensure that living donors receive comprehensive information, proper medical care, and emotional support throughout the donation process. They also strive to protect the rights and well-being of donors, addressing issues such as informed consent, post-donation health monitoring, and financial compensation for expenses incurred. These advocates, by championing the cause of living donors, help to increase the number of successful donations, raise public awareness about the critical need for organs and tissues, and foster a culture of altruism and community support. Their efforts significantly contribute to saving lives and enhancing the quality of life for recipients, all the while ensuring that donors receive respect and value for their selfless contributions.
The objectives of the masterclass were to provide a comprehensive understanding of the importance of advocating for living donors. The masterclass aimed to provide deep insights into the protection of donor rights and the maintenance of ethical transplant procedures. Ensure that every donor's decision is both informed and voluntary by navigating the complexities of living donor advocacy. Empower transplant coordinators to make a significant impact in the transplant community and promote ethical standards in organ donation.
Mr. Brendan Parent, Director, Transplant Ethics and Policy Research, and Assistant Professor, Dept. of Population Health and Surgery at NYU Langone was the invited speaker. Ms. Pallavi Kumar, Executive Director, MF NCR, and Ms. Jaya Jairam, Project Director, MF Mumbai, were the moderators for the masterclass.
Ms. Tripti Nanda, Director of Quality JCI Coordinator; Dr. A. K. Yadav, CMO (NFSG) NOTTO; Dr. Gurinder Kaur, Facility Director, Fortis Hospital, Vasant Kunj; Mr. Siju Nair, Transplant Coordinator, Apollo Hospital, Navi Mumbai; Ms. Sudha Bhamidipati, Caregiver and Dr. Atul Kochhar, CEO, NABH were the panellists.
Ms. Pallavi began the masterclass by showcasing India's living donations over the last 12 years.
Mr. Brendan explained the following points in detail using case studies:
• Who, What, and Why is an ILDA, exactly? An ILDA is a trained professional who protects and promotes the interests of living organ donors. They ensure that donors are fully informed, free from coercion, and receive ongoing support throughout the donation process.
• CMS COP 482.94 and OPTN/UNOS Policy 14.2
• ILDA timing and regularity of patient contact
• IDLA voice at the selection meeting
• The main goal of an ILDA is to exclusively advocate for the potential donor's rights, well-being, and best interests.
• Right fit for ILDA—roles—finding the right individual for the role
Ms. Sudha, whose husband received a liver transplant, recounted the challenges and emotions she encountered during that period. Despite having a compatible blood match and being expected to donate her liver, she felt confused and scared, unable to make a decision. She emphasised an important point about ILDA, noting that while everyone focuses on the recipient during the donation process, the donor also requires equal attention.
Dr. Gurinder emphasises the importance of evaluating a donor's psychological state before subjecting them to physical testing. The donor's willingness is paramount for proceeding with clinical assessments. Transplant coordinators must understand the donor's independent perspective and the motivations behind their decision to become a living donor. Dr. Gurinder stressed that the emphasis should be on the quality of the transplant rather than the number.
Mr. Siju explained the role of an ILDA and the donor care process in their hospital setup. He also discussed the cases where ILDA rejected the donor's donation.
Ms. Tripti then discussed the standards, COP 9, 9.1, and 9.2, which were introduced by the Joint Commission International to prioritize living donors and define the five parameters for becoming a living donor advocate.
Dr. Atul stated that the various stakeholders should collaborate to make a compelling case for a particular initiative. Over time, this can transition from a well-established practice to the incorporation of standard protocols, and ultimately, into regulations. He emphasised that NABH always prioritises patient safety. In this context, the term "patient" includes both the donor and the recipient, making their safety a crucial criterion. NABH focuses on the safety of all involved, including the staff and the facilities handling the transplant, thereby ensuring a comprehensive ecosystem supported by its framework and tools.
Participants asked the following questions during the masterclass:
• I agree that the primary loyalty is to the donor, but is it not true that one must provide a written explanation for not donating? Could you provide an example of a safeguarding strategy for donors?
• Is it legal to excuse the donor family in order to save a female donor who refuses to donate her organs?
• If the wife is hesitant to donate her organs to her husband and she is not the primary provider for the family, what are the options available to her in this situation?
• Do you feel the IDLA role is not played properly? Did the JCI take any corrective action?
Mr. Brendan's replied on the thank you email sent by Ms. Pallavi: "It was my pleasure, Pallavi and Jaya. I thought it was a great session. You brought together an excellent group. Gave me insights into the unique Indian context. You are doing essential and challenging work.Looking forward to continued collaboration".
Close to 73 participants attended the webinar.
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