What are the Big Living Donation Issues?

[Michael]

Living Donors Online's mission is to improve the living donation experience. As we celebrate our first decade of existence, we want to re-energize our efforts to fulfill that mission. We believe there is still a great deal of progress to be made!

We would like your input. In your opinion, what are the most important living donation issues that need to be addressed? Where should LDO and other living donor advocates focus their efforts? Please reply to this posting with your suggestions.

Feel free to list as many issues as you like, and add comments to identify the issues you feel are most important--the areas that, if changed, would have the greatest impact on the living donation experience.

Thanks for you help!

[Fr Pat]

I think the big issues that need improvement have to do with the health of donor after the surgery:
--- The failure of some transplant hospitals to recognize and correct post-donation complications.
--- The lack of a comprehensive long-term follow-up of the health of living donors in the U.S.

Related to these issues, of course, is the failure of some hospitals to sufficiently inform potential donors of all the known risks, and of the the insufficient data on long-term health of American donors.
     best wishes,
          Fr. Pat

[Orchidlady]

Lack of uniform testing standards and thresholds of acceptable testing ranges
      Makes it difficult to know is that team truly looking out for the best interests of the donor - or are they just interested in rushing the donor through the tests like a herd of cattle.

Failure to recognize psychological needs and issues of donors both pre and post donation
      A couple of talks with a social worker does not cut it.

Lack of long term, documented follow up and monitoring of donors
    Supposedly, some is there, but I think very, very few follow through. You are pretty much on your own to monitor your own health and progress

[sherri]

Agree with the above.

Lack of uniform standard protocols between hospitals. Each one appears to do their own checklist, testing and so forth.

There should be standard of care imposed on all transplant centers, not just recommendations which they can choose to follow or not and consequences if not followed.

Medicare or other medical benefit to all donors to enable donors have comprehensive follow up care.

Independent advocates truly not associated with the hospital performing the recipient's transplant. More oversight by an outside institution. We see what happens when hospitals conduct their own peer reviews.

[Donna Luebke]

Uniform standards for evaluation, consent, and aftercare.  

We need federal dollars which can be accessed to care for donors with complications.  Even if a donor has insurance, they should not pay for any complications related to the donation (not just the surgery).  Relying on the recipient's insurance coverage could be an issue for 'valuable consideration.'  Valuable consideration is not about donors being paid--it means one person gains while another loses so if one donor is covered by a cadillac plan and another by a suboptimal plan, we could claim is in violation of NOTA.  All kidney donors should have a Living Organ Donor Network insurance policy.  Again, those with and those without brings up the concern for inequities.    

We need uniform definitions for the quality indicators that should be tracked and reported on all donors.  Instead of saying 'complication' we should move to quality indicators.  QIs track how a patient moves through your hospital system and identifies all adverse events and deviations from norm including if there are reoperations, readmissions, etc.  Is not enough to document a reoperation or readmission but need a linked diagnosis.  We need a national living donor registry independent of the current OPTN system--one that allows donors to access their records to verify the information AND one that allows the donors to submit data on their own behalf. History has proven that the OPTN cannot and will not get this done.  Donors are not fully informed without data.  We need consent processes that fully integrate all surgical literature, risks, data not just that which uses live donors as the denominator.  We are surgical patients first--we are people with one kidney for the rest of our lives.

We are half the donor pool.  We need a system that focuses on the needs of live organ donors.  Long overdue.