Categories
Informed Consent Living Donor Misinformation Living Kidney Donor OPTN

Other Unrelated Directed Living Kidney Donors

I recently observed two separate instances of people insisting that most living kidney donors were donating to “people they didn’t know” or “weren’t related to”. This is so far from the truth that I wondered where these folks had gotten their information. Rather than risk a she-said-he-said scenario, I turned back to the source documents.

Cuz I’m a source document kind of woman where these things are concerned.

 

First I went to Davis’ & Cooper’s “State of the U.S. Living Kidney Donor“, published in 2010, which compared living kidney donation in 1988 and 2008. Their pie charts were eye-catching enough, I suppose, but they failed to provide specific numbers, forcing the viewer/reader to make estimates. Which I’m not particularly fond of.

But worse was the categorization of living kidney donors’ relationship to their recipients:

Biological parent, child, sibling, other relative – okay.

Spouse/partner – relevant.

Non-directed donation.

Other.

Not reported (not sure how this possible considering it’s a required field on the official Living Donor Registration Form, but I’ll get to that in a minute).

But then there’s “Other Unrelated Directed Donation”.

 

Since “related” in transplant terms means biological, any relationship that isn’t a spouse/partner is considered “Other Unrelated Directed Donation”? That seems problematic.

 

I then tapped into SRTR’s annual report, thinking they *must* have more comprehensive and detailed demographics.

Not really.

A line chart this time, from 1998 to 2011. One line for ALL related LKDs. Another for ‘distantly related’ (??), a third for Spouse/Partner, a fourth for Paired Donation*, a fifth for Other, and a sixth for the Unrelated Directed.

And again, with no actual numbers, just approximations on the graph. *sigh*

 

So we have a category that composes approximately 20% of LKDs which could mean any of the following:

– best friend

– neighbor

– dude on the street holding a sign

– co-worker

– cousin’s spouse

– billboard solicitation

– book club member

– step-parent/child

– social media solicitation

– dog groomer

– postal carrier, etc.

Lumping all those scenarios into the same category seems a bit broad, not to mention inaccurate for data collection and analysis purposes.

 

I dug up the Living Donor Registration Form (LDR) which is required by transplant centers for every living donor. The categories can be found at the top of page 2 under “donor type”. The last option says “Non-Biological, Other Unrelated Directed Donation”.

And more importantly: Specify. 

In some small way, it’s good to know the LDR form isn’t as crappy as the resultant, publicly released data. I’d like to think the transplant centers follow directions and actually fill in that little field (or that OPTN implements enough quality control to make them), but I’ve seen enough data sets over the years to know that’s highly unlikely. It’s also possible that the answers to that field are so varied that it’s ‘easier’ to lump them all together for graphics purposes. And it’s possible that OPTN and the transplant centers don’t want to examine the composition of that category too closely (especially in regards to ‘solicited’ donors). There are probably other options I haven’t considered as well.

The folks who have the perception that LKDs are donating to strangers/people-they-don’t-know are getting the idea from somewhere. Is it the plethora of media stories about swaps, pairs, chains and solicitations? Is it the transplant centers’ websites, or their sponsored workshops? Are the small number of over-enthusiastic unrelated LKDs dominating the conversation?

 

My concern about this data is as it always has been – accuracy. Transplants, because they are supported by public money and public body parts, are a matter of public health and public policy (Could I use the word “public” more times in one sentence?). Therefore, the public (there’s that word again) deserves full and uncensored information, not what’s most expedient or convenient. Unfortunately, most of the citizenry don’t know that’s not what they’re getting. Which is a problem all its own.

 

 

*On one hand, i understand why Paired Donation or Chains are their own separate category, but the if the goal is to assess the composition of living kidney donors, this defeats the purpose. Say a person wants to donate to their sister, but s/he isn’t a match. Meanwhile, someone else wants to donate their cousin but they also aren’t a match. In a pair/swap situation, those two LKDs are technically donating to a *stranger*, an “unrelated directed” donation, but their intention is to get a kidney for their sister/cousin. Considering them “unrelated donations” skews the data and misleads the public as to who living kidney donors really are.

Categories
Ethical Considerations Living Kidney Donor Organ Allocation

Rationing – the dirty word in the healthcare debate

Browsing through SRTR stats the other day, I ran across this data regarding kidney graft (transplanted organ) survival rates for those 65+ at the time of transplant.

Note: I really would like to see this broken down further by age so it would be possible to know how the graft survival is affected by each subsequent year. I’m also notating the year(s) when the info was compiled because they vary a bit. I’m guessing SRTR wanted as recent data as possible due to advances in anti-rejection meds and the like.

This applies to those receiving a living donor kidney:

3 months (2005-2006): 96.9%
1 year (2005-2006): 94.4%
5 years (2001-2006): 73.1%
10 years (1996-2006): 36.3%

If asked, a transplant professional will claim a living donor kidney lasts, on average, 15 years. Clearly that is not the case for this demographic.

With the knowledge that kidney transplants are not cures, and that a person can survive on dialysis (so the lack of a transplant is not condemning someone to die as popular opinion might think), should our transplant system reexamine the notion of giving living donor kidneys to those 65 and older?

The usual immediate reaction to this sort of proposal is a hearty “No!”, bringing to mind so-called death panels, or as I like to call it, ‘putting grandma on the ice floe’. But as I just stated, no one is being denied treatment. The national waiting list with deceased donor kidneys, dialysis, plus relevant medications and other therapies, are available.

There’s still a lot of cringing and that’s okay. No decent person really wants to see anyone die, even if we all intrinsically know that death is inevitable. In the U.S. we’re all brainwashed into believing that modern medicine should be employed until all avenues are exhausted, no matter the cost. A suggestion such as this would require a paradigm shift.

All transplant professionals acknowledge a severe kidney shortage, and living donor kidneys are seen as most valuable. So, does it makes sense for two-thirds of this precious resource to be destroyed in less than ten years on those 65 and over when 60-plus% of living donor kidneys given to receipients 64 and younger are still kicking at the ten year mark?

Let me put it another way – The transplant industry has lulled itself into believing that living donation is ‘ethical’ because the ‘benefit’ to the recipient outweighs the ‘risk’ to the living donor. But not all living kidney donors go on to have happy endings, and the more years spent as a one-kidneyed person, the higher the risk and incident of hypertension, cardiac issues and kidney disease/failure.

A. 1-2 living donors die per year, within 90 days of surgery. How many years should the recipient ‘get’ out of that kidney in exchange for their donor’s life?

B. Was condemning Daniel Huffman, 17, to sixty years with one kidney, not to mention the relinquishment of his dreams as a football player, worth the ‘benefit’ his 60-something-year-old, diabetic grandmother received from his kidney? Does it matter that her diabetes will eventually destroy the transplanted kidney too, if a pancreas transplant is not done? Or that Daniel committed suicide eight years later?

C. In the U of Minnesota study the media-types like to quote, the reported incident of end-stage renal disease (ie. in need dialysis/transplant) in living kidney donors was 180 per million in comparison to 268 per million in the general population. How many years should a transplanted kidney survive to compensate for putting another, previously healthy, person in dire straits with their own renal health?

Transplant recipients will never be free of their kidney disease, and living donors will never regain their pre-donation health and life. If we are to continue using living people for their kidneys, we must start examining each transplant in a greater context than what can be gained by the recipient. As Dr. Murray would say, it is our moral duty.