Here are the facts:
ECMC is suspending its living kidney transplant program following the death of a donor from an illegal drug overdose.
Doctors successfully transplanted the organ to a family member in the spring of 2013. Six months later, the donor died.
ECMC decided, with consultation with the United Network for Organ Sharing, the non-profit organization that regulates live organ donations, to temporarily suspend the program until mid-July 2014.
The hospital released the following statement:
“ECMC proactively decided to temporarily suspend living donor recoveries. The ECMC transplant program otherwise continues unaffected and ECMC fully expects that the living donor program will be reinstated by mid-July 2014. In the meantime, the transplant program will fully support and guide any potential living organ donor and recipient in the alternatives available to them.”
If that were the end of it, this would be a short post. But it’s not. At least two news stations, WIVB and WGRZ, managed to make this tragedy all about the recipients. Here is the missive I sent to both these reporters (the version below went to Brown at WGRZ; I altered the wording regarding Laurie and Chase for Ms. Kingston):
As a living kidney donor and living donor activist, I read the news of ECMC’s living donor death with great sadness. My sorrow, however, became dismay when I realized your story’s only concern was the temporary cessation of transplants. As if the donor’s death were nothing more than an afterthought.
The first living kidney donor transplant occurred in 1954, yet a psycho-social evaluation was not required for potential living donors until 2007 (CMS Final Rule). But it wasn’t until last year, under pressure from HRSA at DHHS, that the policy specified details.
Currently, a transplant center must obtain the prospective living donor’s history of “smoking, alcohol, and drug use, abuse, and dependency”.
They must also screen for “any psychosocial issues, including mental health issues that might complicate the living donor’s recovery and could be identified as potential risks for poor psychosocial outcome”.
And finally, a transplant center is supposed to exclude or reject any potential living donor with a “diagnosable psychiatric condition requiring treatment before donation, including any evidence of suicidality”.
But here’s the reality:
- Approximately, 30% of U.S. living donors experience depression, anxiety, anger, grief and/or PTSD post-donation.
- One-third of living kidney donors’ psychological and distress scores worsened one and three months following donation. (Taghavi 2001).
- 15% of kidney donors are on antidepressants three months after donation (McCune)
- 2% of donors had a Diagnostic and Statistical Manual of Mental Disorders IV (DSM-IV) psychiatric diagnosis preoperatively, however, 15% had an Axis I disorder at 12 months. (Smith et. al. 2004).
All of these findings well exceed the community sample range of 2 to 9% for major depression as reported in the DSM-IV.
Transplant centers are not specifically required to offer structured aftercare or support services to living donors, and in fact, not a single center does. Yet it’s been determined by multiple studies that a lack of support contributes to these issues, and early counseling may alleviate suffering.
ECMC determined this living donor to be healthy, both physically *and* psychologically. Yet six months later, s/he is dead. This is a patient safety failure of massive proportions. Instead of lamenting the delay, Laurie and Chase should be grateful; this investigation just might save her life.
Because after all, we’re more than medical supply. Living donors are people too.
Note: In 2007, OPTN’s Living Donor Committee proposed comprehensive standards for living donor evaluation, selection and treatment. These policies were violently rejected by the “membership” (aka the transplant centers). I bring it up because the proposed policy contained an appendix with a detailed rationale for interviewing a “Donor Support Person” (spouse, significant other, parent, friend, etc) during the living donor evaluation AND an inventory of questions for a POST-donation psychosocial interview of the living donor.