Advocacy Living Kidney Donor OPTN

Guest Post- Living Kidney Donor Medical Evaluation Public Comment

The proposed minimum requirements are based on recommendations from the Joint Society Work Group (AST, ASTS, and NATCO) to the OPTN Living Donor Committee. Where is the American Society of Nephrology, American College of Surgeons, American College of Physicians, American Society of Anesthesiologists, and independent donor advocates? It is dangerous to assume that the only experts are transplant industry insiders. As noted in this proposal, “a standardized medical evaluation process could improve the confidence of living donors in the safety of living donation.” Without a standard, there is no confidence nor is live donation “safe.” “Over time, analysis of the living donor medical evaluation could contribute to better outcomes.” By 2014, when the OPTN proposals for live kidney donor consent, evaluation, and follow-up are implemented and analysis started, we will be celebrating the 60th anniversary of the first live kidney donor. How much more time is needed? It saddens me that kidney donors get only the ‘minimum’. What about live liver lobe donors? We do have to start somewhere especially since there is a directive from HRSA (finally some oversight.)

Edit this proposal to state that a detailed health history and medical evaluation must be performed by physician/nurse practitioner and Anesthesiologist similar to such standards for all patients undergoing Presurgical Evaluation. A surgeon is not a medical expert unless he/she has completed a medical residency program, nurse practitioner training program or is board certified in nephrology. A surgeon can order and evaluate the necessary labwork and diagnostic studies unique to live kidney donation. Histocompatibility should be decided long before the medical evaluation and only after the potential donor consents to evaluation and surgery. A donor’s primary care provider should be an integral part of the donor team. A licensed or Board-certified mental health expert should complete the psychosocial assessment. Use clear language to state if after evaluation, the donor is deemed to be ‘marginal’ or ‘medically complex’. If so, state what this means to the donor’s short and long term health and insurability. Delete any language that encourages a donor to shop around until someone takes their organ offer. Please do not encourage this behavior.

Edit the proposal in language a lay person can understand. Public disclosure regarding the lack of high quality standards by OPTN member hospitals should be noted on websites such the OPTN or ACOT. A potential donor can then engage their primary care provider, family, and friends in an open and honest discussion about the evaluation, its risk, and the risk of a major surgery which results in altered kidney function for the remainder of the donor’s life. Wide variation in donor evaluation and suitability criteria; absence of written guidelines for evaluation, and identifying only 16 programs as Best Practices is alarming. There are over 200 OPTN member kidney programs.

All potential donors should receive copies of the transplant programs policies and procedures regarding live kidney donation. This information should be readily available since kidney recovery programs are required to develop specific protocols, policies, and procedures per the 2007 CMS Rules and Regulations for Transplant Programs and will be evaluated accordingly.

If living organ donation is a practice that society and medical establishments want to support, do they not have special obligations to ensure the safest possible passage for the living organ donor? (Benner, 2002) Safe passage starts with a thorough medical evaluation by the most qualified person available; not a minimum requirement. There are no mandatory policies to protect live donors; no regulation of centers or surgeons performing these surgeries, and no standards of care especially for informed consent, preoperative assessment or for donor aftercare. Again, we have to start somewhere.

Benner P. (2002). Living organ donors: Respecting the risks involved in the “Gift of Life.” American Journal of Critical Care. 11:266-68.

I am a board certified Adult Nurse Practitioner with an MSN in Critical Care Nursing. I recently transitioned from the Heart & Vascular Center to the Center for Biomedical Ethics at MetroHealth Medical Center in Cleveland, Ohio. I have over 31 years of nursing with experience in adult critical care, cardiology, electrophysiology, trauma, bioethics, end-of-life care, and organ donation and transplantation including living organ donation. I co-lecture the organ donation & transplantation and living donation sessions for the Masters in Bioethics program at Case Western Reserve University.

I am a living kidney donor (1994) and the sister of a deceased donor liver transplant recipient (1997). From 2003-2006, I served as a public representative on the United Network for Organ Sharing and Organ Procurement & Transplantation Network Board of Directors. I am serving in my 6th year on the Lifebanc Board of Directors and am the Secretary of the Executive Committee. I am an independent donor advocate; advocating for safeguards and standards of care for living organ donors with specific focus on their aftercare. I was a co-investigator in a MetroHealth Medical Center sponsored research study “Living Organ Donor Pilot Study: The Ethical Dimensions of Living Organ Donation from Donor Evaluation to Aftercare.”

Donna Luebke

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