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Ethical Considerations Informed Consent Living Donor Research Living Kidney Donor

8-11x increased risk of kidney failure too low

Not surprisingly, researchers are still debating living kidney donors’ risk of end stage renal disease or kidney failure. The two most damning studies say that LKDs have an 8-11x increased risk ESRD as compared to their well-matched, two-kidneyed counterpart. Of course, the pro-living donor people tried to minimize these findings, calling it a “modest” 1% absolute lifetime risk. The fact that most people, meaning the public, has no idea what that really means, certainly helps in their information manipulation.

 

Steiner agrees that the prior studies’ findings are not absolute, but only because they tend to lump all living kidney donors together as a monolith. He asserts that certain classes of kidney donors assume a much *hgher* risk of end-stage renal disease than previously stated. If the risk of ESRD is due to the loss of nephrons at the time of donation (the conclusion of the aforementioned research) then LKDs under the age of 35 have a much *higher* risk than those older than 35, because they’re living more of their life without a Renal Reserve. Their already reduced nephrons will be damaged and become dysfunctional through disease, damage, toxins and age.

He also states that African-American donors and those with lower pre-donation GFRs are at a higher than previously stated risk. African-American folks have a much higher incidence of diabetes, the largest cause of kidney failure in the US, so this squares with all other data.

Too many transplant centers are still using the “one size fits all” pre-donation GFR cut-off, which severely harms LKDs who fall on the lower end of the spectrum. In 2010, a Consensus document on LKD medical evaluation called for a predonatoin GFR based on sex, age and Body Surface Area, but the members of OPTN (transplant centers and others who profit from transplant) removed it from the proposal. Steiner advocates a much higher predonation GFR cut-off, and utilizing older donors with minor medical abnormalities.

 

 

 

Steiner, R. (2016). Moving closer to understanding the risks of living kidney donation Clinical Transplantation, 30 (1), 10-16 DOI: 10.1111/ctr.12652

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Ethical Considerations Informed Consent Living Donor Research Living Donor Risks Living Kidney Donor

Understanding Kidney Donors’ Increased Kidney Failure Risk

By now, we’ve all seen the studies stating that living kidney donors have an 8-11x increased risk of kidney failure as compared to their well-matched, two-kidneyed cohort. And you’ve probably seen the transplant industry’s spin on that data, their sputtering “Well, but, the *absolute* risk is still really, really low”

But is it?

Steiner attempts to answer that question, at least some of it, by breaking down the overall risk into its important pieces-parts. He says:

 

“The 1% lifetime post-donation risk in the US study requires medical screening to predict ESRD in 96 of 100 candidates. This is particularly unlikely in the 30–35% of candidates under age 35, half of whose lifetime ESRD will occur after age 64. Many experts have attributed the increased relative risks in these studies to loss of GFR at donation, which ultimately means that high–normal pre-donation GFRs will reduce absolute post-donation risks.”

“Young vs. older age, low vs. high–normal pre-donation GFRs, black race, and an increased relative risk of donation all predict highly variable individual risks, not a single “low” or “1%” risk as these studies suggest.”

A uniform, ethically defensible donor selection protocol would accept older donors with many minor medical abnormalities but protect from donation many currently acceptable younger, black, and/or low GFR candidates.

I encourage everyone to read the whole thing. Your health may depend on it.

 

 

Steiner, R. (2016). Moving closer to understanding the risks of living kidney donation Clinical Transplantation, 30 (1), 10-16 DOI: 10.1111/ctr.12652

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Ethical Considerations Living Donor Research Living Kidney Donor Psychosocial Risks

Potential Kidney Donors Are Ambivalent

According to this Irish transplant center. 15.5% of potential LKDs voluntarily writhdrew from the evaluation process. However, the number is actually higher than they’re reporting. Apparently, In Ireland, if multiple potential LKDs come forward for a recipient and they are all acceptable blood and HLA matches, only *one* is permitted to continue with the evaluation (How they make the determination of which potential LKD proceeds is unclear). So, the authors are including *all* the potential LKDs who were adequate blood/tissue matches.

Their calculation is 95/614 (15.5%), whereas 261 of those 614 didn’t progress past the immunological test because of multiple potential LDs.

When those are removed, the statistic beomes 95/353, which is 26.9%.

 

Someone asked me why it was significant that over 1 in 4 potential living kidney donors deemed “acceptable” matches for a would-be recipient did not continue the evaluation progress.

First: coercion. It’s been well-established that potential living donors experience “pressure” to donate, and the closer (biologically/emotionally) one is to the prospective recipient, the greater that pressure, Ireland, unlike the US, is not as keen on random members of the living public donating their organs to strangers. Therefore, the potential LKDs in this study were emotionally and/or biologically related to their would-be recipient. That nearly 27% of them still decided not to be evaluated speaks volumes to the ambivalence present in many donor candidates.

This above fact is crucial because the public perception of living donation (which is carefully crafted by the transplant industry, specially selected living donors, and complicit media types) is that living donation is positively “life changing”* for the kidney donor. The knowledge that more than 1 out of 4 people who “match” their intended recipient choose not to donate can be comforting to other people who are suffocating under the pressure to continue with the process.

Living donation should be a *choice*, a fully informed and un-coerced choice, free from the pro-recipient foundation of the transplant system. Information like this helps to make that happen, and that’s invaluable.

 

*A rabbi is contacting living donors through social media to gather their quotes/words on how donating was “life-changing” for them. I’d like to link to the source material, but it was shared in a “closed” FB group and I have to respect the group’s rules.

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Ethical Considerations Informed Consent Living Donor Research Living Donor Risks Living Kidney Donor

Living Kidney Donors Over the Age of 55

The authors retrospectively analyzed 482 cases of living related kidney donation and transplantation. “The cases were divided into 2 groups by donor age > or =55 years (aged donor group, 136 cases) and <55 years (young donor group, 346 cases).”

“(eGFR) was lower in the aged donor group compared with in the young donor group. After transplant, the mean eGFR of the graft in the recipient was also lower in the aged donor group than in the young donor group.”

“Compared with the young donor group, in the aged donor group incidence of proteinuria and 24-hour urinary protein were significantly higher. However, the incidence of delayed graft function was not significantly different between the 2 groups. We found that aged kidney grafts had no significant effect on long-term patient and graft survivals.”

 

It’s not surprising the authors focused on the recipients’ results far more than the donors’. While I am hesitant about any study that aims to say “Yes! Let’s use living human beings as medical supply!”, this topic is an important one.

According to the USRDS, the average age of end-stage renal disease onset in the U.S. is 64.4 years old. Meanwhile, the average age of a living kidney donor in the U.S. is 40/41 years old.

 

As the U.S. population continues to age, the prevalence of ESRD will increase, as will the so-called “need” for donor kidneys. But…

  1. Family sizes are smaller, resulting in fewer potential biologically related donors (All the current emphasis on “altruistic” or “good samaritan” or non-related donors makes more sense now, doesn’t it?)
  2. Median age in the U.S. is increasing (Median = midpoint, where 50% are below and 50% are above)
  3. The U.S. population is suffering from obesity, diabetes, heart disease, etc., which reduces the pool of potential living donors.
  4. The longer a person  lives with one kidney (aka reduced kidney function), the higher their risk of long-term repercussions, cardiovascular disease and death, and renal failure.
  5. GFR declines naturally as we age, so an older recipient wouldn’t require the same post-transplant GFR as someone much younger.

 

So, with all that in mind, the use of “older” (over 55yoa) living kidney donors – IF THEY ARE IN REALLY, REALLY GOOD HEALTH AND FULLY INFORMED – makes sense. Transplant algorithms are designed to maximize efficiency, and it’s inefficient to give a recipient expected to live another 10 years a kidney predicted to survive 40 years. More so, the entire justification of living kidney donation is predicated on the idea of the benefit to the recipient outweighing the harm to the donor*, and that simply isn’t the case if the recipient receives 5 years of life while the donor is denied 30 years of full renal function (and all that it implies: adrenal, potassium, vitamin D, etc).

 

Of course, I also believe that every person who financially benefits from living donation should have to donate – put your money where your mouth is and all that – but for now, I’ll make do with incremental steps toward justice.

 

Cheng, K., Huang, Z., Ye, Q., Ming, Y., Zhao, Y., Liu, L., Zhang, S., Chen, Z., & Wang, Q. (2015). Midterm Outcome of Living-Related Kidney Transplantation From Aged Donors: A Single-Center Experience Transplantation Proceedings, 47 (6), 1736-1740 DOI: 10.1016/j.transproceed.2015.06.016

 

 

* I disagree with this justification, btw; I think it’s total bullshit and inaccurate and dismissive of living donors as separate from their recipients, but that is a subject for another day.

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Ethical Considerations Follow-Up Informed Consent Living Donor Research Living Donor Risks Living Kidney Donor Psychosocial Risks

Living Kidney Donors Lose Vitality

The folks at Beth Israel Deaconess Medical Center sent one-year and two-year post-donation surveys to the people who donated kidneys at their hospital from September 2005 through August 2012. Here are what they found:

 

  • Surveys were only returned by half the living kidney donors (59% at one year; 47% at two years). In fact, only 37% of living kidney donors returned both surveys, while 31% returned neither.
  • The non-responding living kidney donors were more likely to be young, non-white, and uninsured at the time of donation.

Non-insured living donors are less likely to seek post-donation follow-up and care, which puts both their short and long-term health at risk. It would be nearly impossible for transplant centers to justify the ethics of performing an elective and health-compromising procedure on an individual they knew doesn’t have access to healthcare – if they were ever asked to justify it, that is. Fortunately for them, there seems to be an implicit belief that living kidney donors don’t require healthcare maintenance and that any means necessary to “save” a recipient is perfectly acceptable. What happens to the person used as the sick recipient’s medical supply is rarely questioned.

 

  • The kidney donors who reported physical health problems associated with donation were less likely to feel informed about donation risks than those without donation-related health concerns (63 vs.
    16 %, p\0.001).

This is a no-brainer if you think about it. OPTN policy is deficient in regards to information about short and long-term risk. Consequently, transplant centers are notoriously lax in what they tell potential living donors. If you’re lucky enough not to experience immediate or short-term complications, there’s no reason for you, as the LKD, to think/believe you weren’t fully informed. It’s only when you’re a donor who *does* have post-donation issues, and you’re unprepared to address them, that it becomes obvious the hospital omitted some crucial information.

 

  • 46% of living kidney donors report more post-surgery pain than expected.
  • 8% reported worse scarring than expected.
  • 30% described the recovery time as slower than expected.
  • Compared to non-obese LKDs, obese donors were more likely to feel that surgical scarring was worse than expected (5 vs. 21 %, p = 0.03) and that the recovery took longer than expected (26 vs. 47 %,
    p = 0.02).

It’s well known that obesity is an independent risk factor for surgical death and/or complications. Obesity also makes the kidneys work harder; many obese individuals with two kidneys experience hypertrophy. Consequently, if one is removed, the remaining kidney, already at 100%, has no capacity to further compensate, leaving the LKD with potentially dangerously low kidney function.

Just like the situation with uninsured living donors, transplant centers have *no* solid ethical ground for exposing obese people to this kind of risk. Luckily for them, no one ever confronts them on it.

 

  • Employed living kidney donors reported being out of work an average of 5.3 (±3.1) weeks. Half were out of work for 5 weeks or more.

Take a gander at transplant-industry related websites and read what they say about recovery time and time off work. Kind of all over the place, aren’t they? Two weeks… six weeks… It’s no wonder people are ill-prepared.

 

  • 18 % of living kidney donors reported donation-related health problems at one-year post-donation. 5 more living kidney donors reported new onset health problems in the second year after donation. These included persistent fatigue, chronic pain or discomfort, infertility, muscle weakness due to positional injury, and new-onset hypertension requiring medication.
  • 31% of living kidney donors gained weight in the first year after donation. They gained a median 10.3 lbs, with an average mean = 2.2 ± 13.1, range = 6–93 lbs.
  • 70% of living kidney donors reported out-of-pocket expenses. The most common expense was for travel (55%), medications related to donation (30%), meals during required transplant center appointments (27%), and lodging (10%).

Costs can be minimized by transplant centers not asking or expecting living donors to travel great distances to donate. But then again, they get paid for surgeries performed, so…

 

  • Also, 20% did not have sufficient paid medical leave or vacation to cover the entire time away from work and consequently lost wages/income.

It wouldn’t be a stretch to think that part of this result is because transplant centers are minimizing recovery time. It’s also probably not a coincidence that approximately the same percentage reporting “insufficient paid leave” is similar to the percentage of LKDs that experience complications.

 

  • 28% of LKDs reported a clinically meaningful decline in vitality at both follow-up time points, relative to pre-donation levels, which indicates a decline in energy and an increase in fatigue.

I didn’t intentionally save the best for last; the article was written that way. But this finding is quite important. The SF-36 Health Survey is a generic tool (meaning that it’s not targeted to a specific age or disorder), that measures eight quality-of-life dimensions.

“Vitality” is both a physical and mental component. The questions use words like “pep” and “nervous” and “energy” and “worn out” and “downhearted”; sentiments many living donors have expressed to me and elsewhere (online forums, etc). Transplant centers regularly minimize or ignore these symptoms, – or flat-out deny they’re associated with donation. (Or my favorite: claim they’ve never heard of such thing – not from their donors!).

But here we have one transplant center’s living kidney donors – folks who donated over a eight-year period –  reporting a significant loss of “vitality”. Due to the kidney donation, of course, but still from varying origins: adrenal dysfunction, reduced kidney function, thyroid dysfunction, depression, etc.

Hopefully this result can be used to influence other transplant professionals’ attitudes and policies. Living donors deserve that much.

 

 

Rodrigue, J., Vishnevsky, T., Fleishman, A., Brann, T., Evenson, A., Pavlakis, M., & Mandelbrot, D. (2015). Patient-Reported Outcomes Following Living Kidney Donation: A Single Center Experience Journal of Clinical Psychology in Medical Settings DOI: 10.1007/s10880-015-9424-9