Ethical Dilemnas in Directed Kidney Donations

Should a person be able to donate his or her kidney to whomever they prefer, or should all kidneys go to the next person on the waiting list?

This is a major ethical dilemma. Basically, with one possible caveat, I feel that a person should be able to direct their kidney donation to whomever they see fit. I explain my opinion fully below.

Basically, Douglas Hanto, M.D., a Harvard Medical School physician, is quoted to have said “Organs should go to the person who needs them the most, not to people because they are members of a club.” See Dr. Sally Satel's article about one example of Dr. Hanto's action to try to stop directed kidney donation
here.

Robert F. Hickey, Ph.D. is a big advocate of live donor kidney donation. Dr. Hickey's life was saved by a live donor donation and he zealously advocates for the right of people to direct their live donor organ donation. He debated Dr. Hanto on this topic recently at Harvard University.

Robert F. Hickey asked me about my reaction to a situation that was raised at the debate at Harvard. A certain Rabbi who was in attendance said that he advocates for his congregants to donate their organs [exclusively] to other Jews and (I think) to only accept organs from other Jews. Below is my response to the Rabbi's approach.

"This is what I feel about a Jew, or any other segment of the population directing their donation to their own group. While I feel that their motives may not be completely pure, I care about pragmatic results, not some theoretical morality or utopian concept of altruism. If a Rabbi encourages his congregants to donate organs only to other Jews, I feel he is doing a morally just thing anyways b/c Jews are on the waiting list like everyone else so if he encourages his congregants to give directed donations and thereby increasing the pool of organs available for transplantation, there will be a net gain in organs available for transplantation and therefore it will, in final analysis, help Jew and non-Jew alike by that Rabbi encouraging his congregants to donate their organs to Jews."
"Now, a morally troubled outgrowth from such an approach that may arise would be if there was a non-Jew on the waiting list who would certainly die today without the transplant and a Jew who can still live for a while as he awaits a transplant. I would recommend in that situation to give the organ to the non-Jew (pay the organ forward) and then give the next organ that becomes available on the waiting list to the Jewish person on the waiting list."
"Besides for these reasons, I believe that the Rabbi can legitimize his approach from a personal autonomy/libertarian perspective as well."
"Personally, though, I feel the best thing to do would be to take a different approach. I think that the Rabbi may be misguided because his approach can be interpreted with a xenophobic connotation so I think he would be better off to teach his congregants the economics lesson I shared above so that his congregants will understand that by donating organ, they will help everyone on the waiting list, which will definitionally move all of the Jews on the list closer to getting their transplants as well."

I do think, however, that people will tend to donate organs in greater numbers for people they fell a greater kinship for (like family, friends, coworkers, etc.) so from a behavioral economics perspective, there would probably be an increased number of organs available for transplantation if we encouraged more people to give directed organ donations to people they are close with socially. This would, in final analysis, cause more lives to be saved so I think the Rabbi is doing a positive thing - saving human life.

Implanted Windpipe: Exciting New Technology in the Field of Transplantation!

Check out this Wall Street Journal article linked to here titled, "Lab-Made Trachea Saves Man," which discusses how Swedish physicians transplanted an artificial windpipe lined with the man's own stemcells into a man who was close to death because of a large tumor and now is doing well after receiving the transplant just a few weeks ago on June, 9th. There is no sign of rejection.

This is very important to the field of transplantation in general because this is the first time a windpipe has been successfully transplanted without it coming from a cadaver, or a deceased person. Therefore, this renews hope for other artificial tissues and organs to be successfully transplanted into the human body, and thus, hopefully saving many lives.

Also, this leads me to muse about possible (but unknown practical applicability)of covering donated organs and tissues with the patients own stem cells to lower the chance of the body rejecting the donated organ or tissue. This issue is briefly discussed in a Bloomberg article linked to here about this first artificially made windpipe successfully implanted into a human.

This is an exciting new frontier in the field of transplantation. In fact, we might call this the field of implantation because organs are only being implanted, not transplanted because the windpipe was not taken from a human donor.

ESRD Disease Management: Is it Posssible?

The Centers for Medicare and Medicaid Services approved 3 demonstrations projects to study health outcomes along with and economic costs of health management for ESRD patients who were enrolled in these projects (the intervention cohort) compared to populations that were not enrolled in the demo projects (the other cohort). The Evaluation report for the first 3 years of the 5 years demonstration projects in its entirety is found here.
The results were mixed - both in terms of health outcomes and cost savings.

The question is does disease management not work for ESRD populations or was there something wrong with the demo intervention designs (study design error) which caused these results?

I hope and believe that ESRD health management interventions can be designed to improve health outcomes for patients and also be (at least) budget neutral.

Practices from a country such as Italy which has much better ESRD health outcomes (See an older post here where this is discussed) should be used here in the U.S. to improves our ESRD health outcomes.

Also, we can study physicians and medical centers in the U.S. who have better than expected health outcomes with their ESRD populations and transfer their practices and protocols to the rest of the healthcare professionals who treat ESRD populations so that a ESRD health management intervention can designed which imoroves both the life expectancy and quality of life of the ESRD population in the U.S.

Lecture Delivered to College Statistics Class on ESRD: Rational Decision Making Model

This is a handout I gave out to an under-grad stats class (where I was a guest lecturer) where I attempted to use a real life situation to impress upon the students the importance of statistics. I then went through six published journal articles relating to this topic to show them how to make a rational decision based on the current literature and statistics available on ESRD to show them how to come to an "evidence based" decision.

Statistics: So What?
Case Study for Kidney Failure Treatment Options Using Statistics as a Guide
Presenter: Eli Lazovsky, MPH
Date: June 14, 2011–06–14
For: HTC Statistics Class
You are advising a friend who has ESRD/Kidney Failure about his/her treatment options. What would you suggest to them as a rational course of action. Remember, there is not necessarily only 1 correct option. Be able to back up (using statistics) whatever you decide to advise your friend. Your friend isn’t so proficient in statistics so (s)he is relying on what you learned in your statistics class to help out.
What is your recommendation to your friend. Focus on what decision correlates with the following goal: Increase Life Expectancy

Diagnosis: ESRD
Treatment Options:
A. do nothing
B. dialysis
C. transplant

B. Dialysis
1. hemodialysis
2. peritoneal dialysis
Type of Access Point for the hemodialysis
1. AVF
2. AGF
3. Catheter
Frequency of Hemodialysis
1. 3 times a week
2. 6 times a week
C. Transplant
1. Before starting dialysis
2. After starting dialysis
Status of Organ Donor
1. Deceased Donor/Cadaver Organ
2. Live Donor
Type of Organ
1. Ideal Organ
2. Marginal Organ

Treatment Modalities for ESRD Patients: How to Increase Life Expectancy

A person who has kidney failure, or ESRD, should be cognizant that the choices s(he) and their physician make regarding their care will effect their life expectancy.

For example, a study comparing Dialysis treatment in Italy and the U.S. points out that in 2006, the annual mortality rate for people with ESRD in Italy was 11.2+/-.6 compared to 24% in the U.S. A link to the abstract of the article can be found here.
The authors write, in part, that "[t]he following may explain the low mortality for ESRD patients in Italy: low prevalence of diabetes, high use of AV fistulae, delivery of care by nephrologists beginning in pre-ESRD stages, their involvement in placement of dialysis vascular access, and their physical presence requirement during dialysis sessions."

Keep in mind, as of 2006, only 38.6% of dialysis patients had AV fistulas compared to approximately 82% of dialysis patients in Italy (figures taken from the study cited above). Recent data is much more encouraging. As of December 2010, in the U.S., 57.5% of hemodialysis patients had AV Fistulas. See here.

AV fistulas are associated with lower infection rates compare to people with AV grafts and thus better long term outcomes for the patient.

A Veterans Administration study linked to here also found that people on hemodialysis who had AV fistulas lived on average about 3 months longer compared to people with AV grafts.

The bottom line is by studying the various manners of treatment for ESRD both domestically and internationally, ESRD best-practices guidelines can be fashioned to increase the life expectancy and the quality of life for people on dialysis.

Why Doesn't the Kidney Transplant Waiting List Reflect the Missing 500,000?

This is a follow-up to the last post found here.
I think there are several possible components which together combine to give at least a partial explanation as to where are the missing 500,000 people with ESRD who are not on the kidney-transplant-waiting-list.
I think that a critical but correctable component of the problem is that the supply of kidneys that become available annually are so miniscule compared to the demand for kidneys, that patients and their physicians often face the grim reality that (under the current manner in which UNOS appropriates organs) their chances of obtaining a kidney are so slight that they make the sad (but often economically rational decision) not to undergo the financial, physical, and emotional burden and trauma of living with the constant anxiety of waiting for an organ that may never come so they just fore-go the process altogether and survive on maintenance dialysis.
This problem can be at least partially ameliorated by expanding the supply of kidneys available for transplantation - like by increasing the supply of live donors! (Another more long term approach to the problem is to screen high risk populations for high blood pressure [like African Americans, people with diabetes, etv.] before they present with symptoms of ESRD so that their blood pressures can be controlled and their kidneys continue to function at an acceptable level. This would decrease the amount of kidneys demanded on the transplant list.)
Some other components that may explain the missing 500,000 people from the kidney transplant waiting list may include:
1. Some people are so sick they would probably never live through the procedure so they don't bother trying to get on the waiting list.
2. Geographically, some people are very distant from a transplant center so they might not be able to get to the transplant center in time to get the organ so they don't bother signing up (but keep in mind that the time sensitive component of transplantation goes away with live-donor-donations).
3. Some people cannot afford the costs involved in the transplant. For instance, they might be denied a spot on the transplant list if the transplant center thinks they may not be able to afford the anti-rejection medication needed to elongate the lifespan of the organ.

The Missing 500,000 People: How Many People Could Benefit from Kidney Transplants?

Does any one know how many people can actually benefit from a kidney transplant in the U.S.? I'm sorry to say, the answer is no! There is an exact number of people registered on the waiting list, but if you are not registered on the list (if for example, you cannot find a transplant center willing to accept you) you are not counted even though you may desperately need a transplant to elongate your life!
Often, a problem cannot be dealt with appropriately until the problem is identified and the scope of the problem understood. There is a severe shortage of organs available for transplantation in general. I will only deal with the acute shortage of kidneys for the time being.
According to the OPTN, or Organ Procurement and Transplantation Network (which is affiliated with the the DHHS, or the Department of Health and Human Service's HRSA, or Health Resources and Services Administration) there are only 88,392 individuals awaiting a kidney transplant on their waiting list. (Accessed from http://optn.transplant.hrsa.gov/latestData/rptData.asp
based on OPTN data as of April 29, 2011)

According to the USRDS, or the United States Renal Data System, as of 6/30/2010 there were 591,642 people in the U.S. with ESRD. See here

That means there are over 500,000 people with ESRD who are not on the kidney transplant waiting list!!! Most of these people are on dialysis to keep them alive.
People who receive transplants live substantially longer than those on dialysis.
See here for more specific data on the subject.

So why doesn't the kidney transplant waiting list more accurately reflect the number of people who could benefit from transplants?
I'll try to partially answer that in another post.