Categories
Advocacy Follow-Up Living Donor Misinformation Living Donor Research Living Donor Risks Living Kidney Donor

Marketing Masquerading as Journalism

If there’s one thing the Cleveland Clinic is good at, it’s self-promotion. And in the past couple of years, they’ve used The Plain Dealer’s Angela Townsend as their messenger (via cleveland.com). Here’s the latest:

http://www.cleveland.com/healthfit/index.ssf/2013/09/cleveland_clinic_researchers_s_1.html

 

Excerpts:

“…analyzing health data from more than 69,000 living donors from 1998 to 2010″

” Complications declined over time, from 10.1 percent in 1998 to 7.6 percent in 2010.” <- Reported complications (see comment below)

“The rates of complications and length-of-stay for donors were comparable with other relatively low-risk abdominal surgeries that required the removal of an organ, such as appendectomies.” <- Hey, news flash: a kidney is NOT an appendix. Folks *use* their kidneys!

“Depression, hypothyroidism, hypertension, and obesity increased slightly over time” <- three years, at most, of data, remember.

 

Below is the comment I left on the article:

 

So much about this press release from the Cleveland Clinic is misleading. At most, the authors had three years of data on the living donors, but more likely they had one year on 2/3 and two years on less than half of their sample.

I know this because even the data retrieved from SRTR is gathered by OPTN and even though *all* transplant centers should follow-up on *all* LDs for two years, more than 35% of LDs have no follow-up reported at one year (per ACOT). Two-year follow-up falls to 40+ percent. In fact, OPTN’s own living donor data taskforce called the OPTN database ‘woefully incomplete’ and ‘useless’ for research or analysis past 6-weeks post-donation.

But even if they had two year of data on 100% of living donors from 1998-2010, it says nothing about living donors’ health and well-being ten, twenty or more years post-donation. Since 1993, more than 400 living kidney donors have been waitlisted in need of their own transplant, approximately 17-20 yrs post-donation. In addition, a 10% reduction in kidney function significantly increases one’s risk of cardiovascular disease, events and death. LKDs lose 20-40% of their pre-donation kidney function.

Living donors’ struggle with depression, anxiety, anger, grief and/or PTSD post-donation has been documented in the academic literature for some time. What’s disappointing is that no transplant center, including the Cleveland Clinic nor Beth Israel engage in any preventative measures or offer structured support services or aftercare post-donation.

As the sister of a kidney transplant recipient, I understand the importance of donor organs. But as a living kidney donors, I find this constant minimization and manipulation of donor risks to be unethical and dangerous.The public should not be medical supply. Living donors are people too.

www.livingdonor101.com

 

[PS. I know that Angela Townsend has the contact information for local truly independent living donor advocates/activists. She simply chose not to seek their opinion on this]

Categories
Ethical Considerations Informed Consent Liver Donor Living Donor Risks

Living Liver Donor Deaths are “Inevitable”

According to transplant surgeons and bioethicists at The Cleveland Clinic, it is.

The first line of Miller, et al’s newly published study, “Preparing for the Inevitable: the death of a living liver donor”, reads:

 

Living donor liver transplantation (LDLT) is associated with a low but finite and well documented risk of donor morbidity and mortality, therefore organizations and individuals involved in this activity must accept the fact that donor death is as a question of “when, not if”.

 

(And they’re not wrong, as I wrote about last November when I got my hands (eyes?) on Abecassis et al’s most recent paper. )

 

Truth be told, I appreciate the authors’ candor. Some scholarly titles are exercises in mental gymnastics, but not this one. And rather than beat around the proverbial bush in their abstract, relying on euphemisms or technical jargon, they get right to the point:

If you take a chunks of livers from living people, eventually you’re going to kill and/or maim some of them. So you and your center better prepare yourselves.

 

What troubles me however, or what question comes to mind, is how transplant centers will address these facts to prospective liver donors. Informed consent requires an operator (aka surgeon, the person performing the treatment or procedure) to disclose to a patient the advantages/disadvantages, pros/cons, upside/risks to a specific treatment. Within that general framework of “patient education” is a lot of room to maneuver – stadium size, in fact  – which has lead transplant centers to omit or minimize or otherwise bend the truth.

 

For example:

“We’ve never lost a donor” as opposed to the historical national statistics.

or

“No greater risk than the general population” when people approved as living donors are much healthier than the general population.

 

So now that the transplant industry has confirmed and agreed that 40% of live liver donors will experience physical complications, and a certain percentage will die as a result of the procedure, how will they disperse that information? Will they use a variation of my prior sentence, or will they behave like one particular transplant center and blame the high profile death of a living liver donor on a lobster dinner?

 

 

Miller, C., Smith, M., Fujiki, M., Uso, T., & Quintini, C. (2013). Preparing for the inevitable: The death of a living liver donor Liver Transplantation DOI: 10.1002/lt.23637