Flaws in a Living Donor Advocacy Program (and Study)

96% of living organ donors in the US are kidney donors, yet the death and complication rate of living liver donors has gotten much more media and public attention (not to mention high profile lawsuits). Consequently, centers have been much more apt to implement safeguards for liver programs, or even forced to by their state legislators (NY and NC).

This particular article describes the advocacy program at University of Illinois Medical Center.

In using a living organ donor, we put an otherwise healthy person at risk primarily for the benefit of another.

I want to repeat this (as they do in the study) but this time with emphasis:

In using a living organ donor, we put an otherwise healthy person at risk primarily for the benefit of another.

No. Not 'primarily'. Totally, solely, completely, and absolutely for the benefit of another. A living donor not only recieves no benefit from donating, they are maimed, harmed and compromised long-term, both physically and psychosocially. This purposeful use of the term 'primarily' is simply a way to minimize the wound inflicted on the living donor.

At the present, we would define our role of advocate as more of a donor "protector" and "educator".

Except that:

The issue of veto power by a donor advocate is a controversial one, and one that we currently do not endorse.

Controversial because surgeons don't want their power taken away, even though they are not equipped to recognize or make decisions on psychosocial, emotional or coercion issues. They spend less time with the living donor than any other professional involved in the process, especially the so-called advocate, so who's really in the best position to render a judgement on a prospective living donor's prospects?

Ultimately, it is the surgical team who is responsible for the final decision on whether the donor goes ahead with the surgery or not

What is the point of having a 'donor advocate' if they the interests of the surgeons will always prevail?

Surgeons are not nephrologists and certainly aren't general practitioners who must have a wider skill set. Surgeons are technicians, plain and simple. They make money only when they go to surgery. If that isn't a conflict of interest, I don't know what is.

It has been the experience in our program that no potential living organ donor has made this call to back our of their donation. Poential living donors, have, however, been disqualified as a donor according to clinical or pscychological criteria.

I'd really like to see some numbers here. How many were disqualified and why? An entire section of this article is dedicated to the ethical responsibility of the surgeons not to inflict harm on the living donor, so why not bolster this claim by citing how many prospective donors were disqualified based on those very issues?

One could argue that simply being employed the same institution as the transplant team is enough to create a conflict of interest within our donor advocate team, we strongly believe this is not the case. Because the advocate team members are in no way dependent on the transplant department for monetary support, nor are we subject to any disciplinary sanctions related to the dept, we truly do function independently.

And what if a particular advocate is vocal in his/her opposition to a surgery going forward, and what if this occurs multiple times? Something tells me that advocate will find him/herself not permitted to be involved with any future prospective living donors. Hardly independent.

As part of the interview process, the advocate asks: What if the transplant fails and the recipient's condition does not improve? This is a topic I think most transplant centers avoid, and one I think should be examined very closely. Prospective living donors need to force themselves to consider the worst case scenario instead of being carried away on their feelings of beneficience or generosity.

To their credit, the authors call for a national registry, citing the inability of the surgeons and transplant centers to regulate themselves. While I agree, it's ironic that surgeons are still given the 'last word' in transplant decisions when they have an undeniable history of providing no follow-up or concern for their patients the minute after they're discharged.

In the interest of full disclosure, this article was published in 2005. They could have (and should've) made inprovements to their program in the years since. Somehow, unfortunately, I doubt it.






Anderson-Shaw L, Schmidt ML, Elkin J, Chamberlin W, Benedetti E, & Testa G (2005). Evolution of a living donor liver transplantation advocacy program. The Journal of clinical ethics, 16 (1), 46-57 PMID: 15915845

Yes, the accused killer and attempted suicide got the liver

Caplan's commentary is sound, but if you really want to know what the public thinks (and thinks they know) about the transplant system, read the comments. Quite illuminating.

http://www.msnbc.msn.com/id/38419132/

ETA: The issue isn't whether he's a killer, alleged killer or confessed killer. If our system were to start deciding who is 'worthy' based on someone's criminal record, a lot of people are in trouble. The problem is the attempted suicide. Transplant committees routinely deny transplants with psychological constraints: eating disorder, active addiction and yes, suicidal behavior. The transplant center was remiss in not taking the time to give him a proper psych eval and ensure his stabilization before considering transplantation. They put profit before ethics, violating the public's trust in the process.

Hopefully we won't let them forget any time soon.

2008-2009 Living Donor Statistics

Subtitle: why to view statistics carefully.

According to UNOS/OPTN and SRTR, 7481 people became living donors in the years 2008- March, 2009 in the US*.

Of those, 267 sought hospital readmission within 12 months of surgery, a total of 3.5%.

However, not all living donors were reported to UNOS at the six-week, six-month and 12-month mark. 134 were lost by the six-week mark, another 884 by six-months, and an additional 3060 by one-year.

So....

- 46/7347 experienced complications severe enough to require hospitalization in the first six weeks.

- 152/6597 sought readmission between six week and six months.

- 69/4421 were rehospitalized between six months and one-year.


The accompanying percentages:

.6% Six weeks
2.3% between six-weeks and six-months
1.5% between six-months and one-year


Based on the table, it's impossible to ascertain an accurate *total* hospital readmission rate at 12 months because I have no way of knowing if any of the living donors with complications at earlier intervals became unreported later. In other words, given the info I have, I can't calculate the proper denominator.

But I can pretty much guarantee that 3.5% will be the statistic used by the transplant industry in every one of their studies and press releases. Now you know to view it with great skepticism.



*Notice this is 15 months and not 12; hence, I don't talk about X number of anything per year.

Living Donor Merchandise

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A Moment of Writing Happiness

Drop a piece of text into this analyzer and find out what famous author your style is like.

I write like
Margaret Atwood

I Write Like by Mémoires, Mac journal software. Analyze your writing!

On that note, not a single word of my manuscript's opening scene will be touched from here on out.... :-)

Conflict of Interest - Living Donors Lose

Amy Waterson, a social psychologist, is the co-chair of the UNOS Living Donor Committee.

A quick websearch brings up the following page. On it are linked many articles where she is quoted or linked.

In 2004, Waterman founded the Explore Transplants program and began counseling 250 renal patients in 20 area dialysis centers.

"What would it be like if you were sitting in a less desirable health care option [dialysis], and no one told you there was something that could return you to your normal life? Waterman asks. "It became clear that people were making decisions without having knowledge. A lot of patients are scared of transplants and the pain; they wonder what if it doesn't work and what if they can't find a donor."

Let me translate: Amy Waterman's day job is to counsel patients with kidney disease on the advantages of transplants. According to some of the other links, she has trained personnel at other dialysis centers to do the same.

Then I found this little gem:

2003 grant recipient
Amy Waterman, PhD
Barnes-Jewish Hospital, St. Louis, MO
"Increasing Living Donor Volunteer Rates, Comfort, and Satisfaction: A Comparison of Three Educational Approaches"

In case I haven't said it enough - There Is An Inherent Conflict Between Increasing Living Donation Rates And Protecting Living Donors. There is no way to balance "Find more living donors" with "We must ensure living donors are evaluated thoroughly and given proper aftercare" especially when there is NO comprehensive long-term data on living donors and NO transplant centers offer mental health or support services. NO ONE, and that includes Ms. Waterman's employer(s).

This is who UNOS feels is qualified to co-chair a Living Donor Committee? A non-living donor whose goal is get people transplants? I was under the impression that the goal of the living donor committee was to develop policy and consider issues regarding the respect, protection and care of living donors, not devise means of increasing their numbers, thereby lining the pockets of the transplant centers.

I guess I was wrong.




[ETA: the other co-chair Connie Davis and the official liaison, Lee Bolton - also NOT living donors]

Yep....

Just changed the name of the name of the blog. I was going to move the whole thing to a new url and whatnot, but halfway in, realized was a total pain in the butt that was. This was much easier :-)

Treating Living Donor like Organ Incubators is Unethical

Once again, the conservative American Enterprise Institute criticizes the U.S. for not allowing legalized organ sales, even though the World Health Organization and every global health initiative has condemned the practice. If this wasn't such a serious topic, this transparent blog post would be laughable, but seeing as some people will actually think their opinion has validity, it's my responsibility to offer a counter-perspective.

Read the entire post here.

Each year, this misguided and wrongheaded public policy takes the lives of nearly 5,000 Americans with end-stage renal disease

and

...the backlog of approximately 83,000 people waiting for their turn to receive a donated kidney

I'm tackling both these statements simultaneously because they originate from the same faulty data. According to UNOS, there are approximately 83,000 folks in the U.S. waiting for a kidney, and 5000 die each year waiting for one. However, as has been discussed ad nauseum on this blog, 1/3 of those people are 'inactive', ie ineligible to receive an organ even if one becomes available. Delmonico and McBride's recent analysis indicated that 52% of the deaths occuring on the waitlist are inactive too. This alone reduces the yearly 'death toll' to 2500. Add in the fact that nearly 20% of those on the waitlist decide for themselves to stop treatment (dialysis), usually due to advancing age, and co-morbid diseases or health problems. After all, the average age of end-stage renal disease onset is 64.5.

Then the question becomes - how many the remaining people have already had one transplant? They're not cures, remember, but just another form of treatment. The vast majority of recipients will need multiple transplants to achieve a 'normal' life span. And, of those approximately 1600 per year who die, how many of them would've actually been helped by a transplant? The authors of this blog post certainly don't know; they've found it more effective to use half-truths and scare tactics to encourage a practice which has proven nothing but hazardous to the kidney donor.

Which brings me to:

In the case of kidney transplantation, the donor is subject to relatively little post-surgical risk. Statistically, a kidney donor fares no worse throughout his or her life than a person with both kidneys. Life insurance companies impose no rating on premiums for kidney donors because, actuarially, they represent no greater risk to the insurer.

In a word - bullshit. Approximately 2 living donors die in the U.S. every year as a direct result of the procedure (within 90 days). Many others suffer permanent debilitating physical complications and still more experience depression, anxiety, anger and PTSD symptoms. The only reason the authors use the phrase "little risk" with a straight face is because the transplant industry has failed to track/follow and study living donors in a comprehensive manner. The existing data far under-estimates the short-term risks to living donors, exacerbated by UNOS and ACOT's acknowledgement that follow-up is spotty at best and non-existent at worst. Long-term data simply doesn't exist at all.

What is known is that since 1993, nearly 300 living kidney donors have registered on the wait list in need of their own transplant. We also know, from a couple of recent studies that the average time from donation to end-stage renal disease is 13-20 years. We also know, not from studies on living donors, but from research on people who have undergone a nephrectomy for medical reasons, that having a single kidney increases one's risk for kidney failure (duh) and cardiovasular disease and death.

And btw, some living donors HAVE been unable to get health insurance for having a pre-existing condition. Try a websearch, the articles are plentiful.

Organ transplantation provides a wonderful example of life-saving science...

A kidney is not a life-saver, not in the sense of a heart or lung. People with ESRD have other treatment options. A heart or liver patient does not.

Then, of course, there is the recipient who is, perhaps, compensated best of all. He or she gets his or her life back.

Faulty logic. Not every recipient experiences an increased quality of life. Some die, some actually fare worse with a transplant than on dialysis. Also, anti-rejection medications have their own long-term side effects, including increased risk of malignancy and cancer.

A more serious consequence of this flawed policy is that it costs thousands of lives annually, and consigns thousands of other people to years of expensive dialysis, the bill for which goes to taxpayers.

Not every person with ESRD is on Medicare, which is what the authors are referring to. Some are on private insurance. Also, not every person who undergoes a transplant was on dialysis prior to the transplant, in which case, there is no 'savings' to the government or the American taxpayer.

What the authors are also forgetting is that currently, Medicare only pays for 3 years of anti-rejection medications. The recipient is then responsible for the costs of the drugs that will keep the transplanted organ from being rejected. What kind of savings are the American people and the government seeing if a significant percentage of these recipients can't afford their meds, stop taking them, experience acute rejection and again end up on dialysis? Nothing.

Yes, some might be poor, but what is wrong with a poor person receiving compensation for performing a noble deed?

Every study published on organ sales (legalized or not) has emerged with the same result: kidney vendors (those who sell a kidney) fare worse after the procedure. Their debt is not eliminated, their quality of life suffers and so does their health. To ignore this damning and unequivocal data, as these authors have done, is the most blatant example of their true intentions, which is not repairing a broken system.

AEI, including Sally Satel and Harold Gershowitz are exhibiting the worst trait of recipients, which is a overwhelming sense of entitlement. To some, the fact Gershowitz took a kidney from his own daughter exposes his lack of empathy and parental duty toward her by risking her life and permanently compromising her physiology. If any of these authors were really concerned about alleviating the organ shortage, they'd advocate the improvement of the deceased organ system by mirroring what Spain and other European countries have accomplished and insist on increased quality of matches to incease graft survival rate.

But these authors and their ilk don't want to wait with the unwashed massed on a national wait list for a deceased organ. Instead, they want the U.S. to emulate Iran and Pakistan and pay to have a living donor kidney at their disposal whenever they want/need one. Their stance is that the living donor is capable of deciding if s/he wishes to sell an organ. Ironically, these same libertarians want the government to foot the bill.

Help for Those With Pre-Existing Conditions

Department of Health and Human Services just announced a transitional insurance policy for those with pre-existing conditions, including living donors. In 2014, insurance companies will no longer be able to exclude people for such things, but until then, this new program is intended to fill the gap:

http://www.hhs.gov/news/press/2010pres/07/20100701a.html