Ethical Considerations Living Donor Misinformation

What’s the Definition of Life Coach Again?

UNOS publishes a quarterly magazine that primarily consists of puff pieces glamorizing the transplant industry. It’s an insider industry periodical so this isn’t surprising, nor is it is particularly controversial or ground-breaking.

In the last issue was the typical “Isn’t this Great?!” coverage of the Cleveland Clinic’s Donor WIN program. In short, four years after the feds determined that transplant centers must report two years of follow-up on their living donors, CCF decided to comply with the regulations by utilizing it as a marketing opportunity and sending press releases far and wide (some of you may recall the article in the Cleveland Plain Dealer some months ago).

Anyway, this particular article was penned by a woman named Ellen Brown. Through the power of Google, I was able to locate her LinkedIn page and professional webpage. On November 13, 2011, I sent Ms. Brown the following email:

Ms. Brown,

I read your recent article in the latest UNOS update magazine regarding the Cleveland Clinic’s Donor WIN program with great dismay. Like Ms. Robison, who was profiled in your article, I too donated a kidney at CCF in 2008. Unlike Ms. Robison, I was not given the royal treatment. My informed consent process consisted of “You could die, but that’s rare” (a lie), and “We’ve only had one complication” (another lie). Suggestions for my long-term health were no more than “Avoid NSAIDS and don’t injury your remaining kidney”.

After my surgery, I languished in PICU/Recovery for more than four hours while my husband and immediate family were sent to a room where I never arrived. Each time I regained consciousness I asked when I could see my sister (my recipient), a precursor to being taken to my room, and on every occassion the nurse avoided eye contact and mumbled “I’m sorry.” Meanwhile, my husband consulted duty nurses who told him “We’ve lost your wife”. Instead of recovering a floor down from my sister, I ended up in a different building with staff who’d never dealt with a living kidney donor. In retrospect, considering the circumstances, I was very fortunate not to suffer any post-operative complications.

A week following the transplant, I called Audrey Caplan, CCF’s Transplant Coordinator, because I had just received news that the graft had failed due to lack of perfusion. I was audibly crying and upset. This Coordinator, whom Ms. Damo referred to as ‘excellent’, offered me meaningless platitudes and promised to call me back with more information. Three years later, I’m still waiting for that phone call.

At my one-month follow-up, my surgeon apologized “for what happened to [my] sister”, never once acknowledging what he had done to me, or offering me a mental health referral. In 2010, I learned about the Donor Win program from an article in the Cleveland Plain Dealer. I was never informed or invited to participate in the program, even though it launched many months before my federally mandated two-year check-up.

It would be easy to dismiss my experience as an aberration (which is why I prefer not to disclose my personal story), but I assure you, it is not – at the Cleveland Clinic nor across the country. After my abandonment at the hands of CCF, I began to research: academic journals, Medicare legislation, public health policies, etc. My intention was to understand and come to terms with what had happened to me and my family. Instead, I discovered a consistent and systemic pattern of living donor neglect by the government and transplant industry extending back many decades.

It sounds conspiracy-theorist I know, but the facts are undeniable.

– OPTN only began collecting social security numbers on living donors in 1994, leaving forty years of living donors’ fate completely unknown.

– A decade after the Secretary of Health implemented a federal mandate of one year of living donor follow-up, 40% of living donors are reported ‘lost’.

– In 2009, OPTN’s own LD data task force reported their database to be ‘woefully inadequate’ and useless for analysis or research. Not a single program has been penalized for noncompliance.

– There are no national standards of living donor evaluation, selection, treatment or follow-up, only ‘voluntary guidelines’. In 2007, the transplant industry had an opportunity to implement such standards, and they refused. Every transplant center makes up their own rules, and is therefore accountable to no one.

– 20-30% of living donors experience depression, anxiety, anger, PTSD and other psychosocial difficulties, yet not a single program offers structured aftercare or support services.

I could continue for pages, but I’ve already taken up enough of your time. I’m not naive enough to believe this missive will cause a major epiphany in your belief mystem. My only hope is that you will consider that perhaps the public face of living donation is not always the real one. If you’d like to know more, I encourage you to read Deborah Shelton’s 2005 series in the St. Louis Dispatch, as well as those written by Laura Meckler.

Cristy Wright, M.Ed.

Over a week passed with no response. I found an alternative means of contacting Ms. Brown (a form on her website, as opposed to the email address I had previously discovered and used), indicating that I had sent prior correspondence and would be writing about such on my blog the following week.

So here we are.

And in case you’re wondering why this event is worthy of a blog post (because believe me, I’ve been ignored by far more important people than Ellen Brown of Shaker Heights, Ohio), please refer to the post title.

Ellen Brown calls herself a Life Coach.

To be fair, I take issue with so-called Life Coaches, mostly because anyone can assume the title and hang out a shingle. It is unfair and potentially dangerous to the public to conflate Life Coaches with professionally trained mental health practitioners who possess Masters’ degrees and PhDs as well as licenses and certificates that require Continuing Education to maintain.

But stunts like this certainly do nothing to alter my opinion.

So yes, Dear Readers, Ellen Brown is no run-of-the-mill writer of medical-industry propaganda. She also claims to “help people navigate challenging life transitions with courage, hope, and optimism”.

Except apparently, if you’re a living donor. Or if you disagree with something she says.

Wonder if her clients know that?

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