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Advocacy Informed Consent Liver Donor

A Little Shameless Self-Promotion (and Living Donor Advocacy)

Megan Carlson wrote this bombastic article the other day, entitled:

Risks of Living Organ Donation Not ‘Sinking in,’ Researcher Says.

With quotes by Your Truly. Go read it; it’s awesome (not because I’m in it. That’s just a bonus).

Read it here too (with photo).

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Megan’s article went live on Thursday, so naturally, it began to make the rounds of the internet shortly following. On Friday night, someone posted it to a Facebook group for living donors wherein Christina Medlam commented:

I guess I’m kind of “lucky” in that regard … the team here made sure I had access to all sorts of information, including the “negative” information – at times it seemed they were doing everything they could to talk me out of it – they went into details about potential difficulties and not only that but in today’s day and age there’s no reason for anyone to feel “uninformed” if people would start taking some responsibility for looking things up themselves and asking questions … taking time to make these decisions … 

there are some things I wasn’t -fully- expecting but as far as this process goes I feel like I went into it with my eyes wide open and this was fully my decision / my choice and I have nothing but appreciation for those that have been involved with us in this journey.

unfortunately there seems to be a trend of blame when something doesn’t quite turn out as expected or a little less than ideal … 

Personally I’d do this all over again , and I’ll still recommend it to others 

it’s not a hero thing – it’s a human thing.

 

For obvious reasons, this didn’t sit well with me, so I responded to her with the following:

 

I take offense at the phrase ‘a trend of blame’. While I’m glad your LD experience was positive, to minimize others’ pain and experience by victim-blaming is simply wrong.

I’m not sure if you’re aware, but in the near sixty years since the first living kidney donor transplant, the transplant industry still doesn’t have any comprehensive data on living donors’ health and well-being. All transplant centers have been required to submit one year of followup on all living donors since 2000 yet over 1/3 are still reported ‘lost’. The mandate required transplant centers to report on 90% of their LDs to be considered compliant, yet according to last summer’s ACOT meeting, only 1/4 of active transplant centers met that standard. This mandate is over a decade old, and not a single transplant center has been penalized by CMS or OPTN for noncompliance. 

Meanwhile, if transplant centers’ websites are to be believed. donating a kidney doesn’t affect one’s lifespan/life expectancy nor increase one’s risk of kidney failure. However, we have NO data to prove either of those statements true, only studies by Segev and Ibrahim that have been taken wildly out of context. 

And finally, the U.S. had no national standards of living donor evaluation, selection, or informed consent until this year, 2013. 

Yet somehow, in your opinion, if a person ‘feels uninformed’ it’s because they didn’t ‘take responsibility’ and want to blame someone else? Not only is that factually incorrect, it’s incredibly cruel.

 

To be fair, I don’t think my reply will change Medlam’s opinion. In fact, if the past four years are any sort of indicator, I actually expect to be attacked and called nasty names. If not by her, by others in the group.

But it’s important to address these sorts of perspectives. Again, not necessarily for the person saying them, but for others within earshot. Due to the lack of structured aftercare or support services for living donors, many seek information, camaraderie and support online, in groups like the one above. Donors who are struggling to understand their LD experience can be harmed by statements like Medlam’s, because it reinforces their already existing feelings of confusion, inadequacy and failure (not to mention that victim-blaming is just wrong).

Not everyone has the same capacity or resources for research or critical thinking on complex medical issues. And in western cultures, we’re taught to defer to the authority of the physician. So while yes, we should do our best to educate ourselves, the legal and ethical burden is on the transplant industry (and it’s professionals) to ensure we’re given the best treatment possible. It’s their responsibility to ferret out a prospective living donor’s expectations and address them if they’re unrealistic. It is their job to, as one nephrologist put it, protect us from ourselves.

Living donors who are suffering as a result of their experience need comfort and understanding. What they don’t need are recriminations and dismissals. They get enough of that from the world at large.

 

 

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