Living Donor Protections Living Donor Research

Flaws in a Living Donor Advocacy Program (and Study)

96% of living organ donors in the US are kidney donors, yet the death and complication rate of living liver donors has gotten much more media and public attention (not to mention high profile lawsuits). Consequently, centers have been much more apt to implement safeguards for liver programs, or even forced to by their state legislators (NY and NC).

This particular article describes the advocacy program at University of Illinois Medical Center.

In using a living organ donor, we put an otherwise healthy person at risk primarily for the benefit of another.

I want to repeat this (as they do in the study) but this time with emphasis:

In using a living organ donor, we put an otherwise healthy person at risk primarily for the benefit of another.

No. Not ‘primarily’. Totally, solely, completely, and absolutely for the benefit of another. A living donor not only recieves no benefit from donating, they are maimed, harmed and compromised long-term, both physically and psychosocially. This purposeful use of the term ‘primarily’ is simply a way to minimize the wound inflicted on the living donor.

At the present, we would define our role of advocate as more of a donor “protector” and “educator”.

Except that:

The issue of veto power by a donor advocate is a controversial one, and one that we currently do not endorse.

Controversial because surgeons don’t want their power taken away, even though they are not equipped to recognize or make decisions on psychosocial, emotional or coercion issues. They spend less time with the living donor than any other professional involved in the process, especially the so-called advocate, so who’s really in the best position to render a judgement on a prospective living donor’s prospects?

Ultimately, it is the surgical team who is responsible for the final decision on whether the donor goes ahead with the surgery or not

What is the point of having a ‘donor advocate’ if they the interests of the surgeons will always prevail?

Surgeons are not nephrologists and certainly aren’t general practitioners who must have a wider skill set. Surgeons are technicians, plain and simple. They make money only when they go to surgery. If that isn’t a conflict of interest, I don’t know what is.

It has been the experience in our program that no potential living organ donor has made this call to back our of their donation. Poential living donors, have, however, been disqualified as a donor according to clinical or pscychological criteria.

I’d really like to see some numbers here. How many were disqualified and why? An entire section of this article is dedicated to the ethical responsibility of the surgeons not to inflict harm on the living donor, so why not bolster this claim by citing how many prospective donors were disqualified based on those very issues?

One could argue that simply being employed the same institution as the transplant team is enough to create a conflict of interest within our donor advocate team, we strongly believe this is not the case. Because the advocate team members are in no way dependent on the transplant department for monetary support, nor are we subject to any disciplinary sanctions related to the dept, we truly do function independently.

And what if a particular advocate is vocal in his/her opposition to a surgery going forward, and what if this occurs multiple times? Something tells me that advocate will find him/herself not permitted to be involved with any future prospective living donors. Hardly independent.

As part of the interview process, the advocate asks: What if the transplant fails and the recipient’s condition does not improve? This is a topic I think most transplant centers avoid, and one I think should be examined very closely. Prospective living donors need to force themselves to consider the worst case scenario instead of being carried away on their feelings of beneficience or generosity.

To their credit, the authors call for a national registry, citing the inability of the surgeons and transplant centers to regulate themselves. While I agree, it’s ironic that surgeons are still given the ‘last word’ in transplant decisions when they have an undeniable history of providing no follow-up or concern for their patients the minute after they’re discharged.

In the interest of full disclosure, this article was published in 2005. They could have (and should’ve) made inprovements to their program in the years since. Somehow, unfortunately, I doubt it.

Anderson-Shaw L, Schmidt ML, Elkin J, Chamberlin W, Benedetti E, & Testa G (2005). Evolution of a living donor liver transplantation advocacy program. The Journal of clinical ethics, 16 (1), 46-57 PMID: 15915845

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