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Living Donor Protections Living Kidney Donor

The Decision To Be A Living Donor

I happened upon a 1968 research article in JAMA entitled “12 Kidney Donors”, detailing how these 12 folks made the decision to be living kidney donors. All were related to their recipient, of course, because there were no ‘stranger’ or ‘unrelated’ donors then, but all showed a remarkably similar decision-making process.

Some excerpts:

It appeared that not one of the donors weighed alternatives and decided rationally. Eight of the donors stated that they made their decision immediately when the subject of the kidney transplant was first mentioned over the telephone “in a split-second,” “instantaneously,” or “right away.” The other four said they just went along with the tests hoping it would be someone else. They could not recall ever really having made a clear decision yet they never considered refusing to go along either and as it became clear towards the end of the selection process that they were going to be the person most suited to be the donor, they finally committed themselves to the act. However, this decision, too, still occurred before the session with the team doctors in which all the relevant information and statistics were put before them and they were finally asked to decide.

None of the final potential donors availed themselves of the “last out” opportunity, although there were one or two subjects who seemed glad when they were rejected for medical reasons after the last test (arteriogram). This leads us to believe that for all participants, and by the same token for all those who refused to participate from the beginning, decision making is an early event preceding all information gathering and clarification offered by the renal team.

The next finding that clearly emerged from our investigation was that once the decision had been made by the prospective donor, he carefully refrained from considering further data and engaged in several maneuvers which permitted him never to vary in his decision or even to question it.

Of the eight subjects who made their initial decision on the telephone on first hearing of the possibility of the kidney transplant, none had consulted his spouse. When questioned about this particular circumstance they all explained that the spouse later on had either been neutral or reinforced their decisions. To the hypothetical question of, “What would you have done if your spouse had said no?” they all answered, “I would have gone ahead and done it anyway.” Several of the donors volunteered the information that friends and acquaintances had tried to dissuade them but, as they put it, “They might as well have been talking to a brick wall.”

Another way in which the original decision was being maintained could be seen in the viewing of the rigorous medical examinations as an achievement test which, if passed, entitled the prospective donor to contribute his kidney.

With regard to the instructions and explanations offered repeatedly by the doctors of the renal transplant team in an attempt to provide the basis for an informed consent, the donors all reported that they had not really been very curious or interested in what the doctors were telling them. Almost uniformly this information was used in exactly the opposite way to that which was intended. The prospective donors reasoned in the following manner: All of the doctors are making an effort to tell me the bad possibilities which means that they must be honest and therefore capable and I can place my life in their hands without any danger.

 

Believe me, this process has not changed one whit in 40 years. We’re still relying on emotion and not intellect to guide us. It’s this precise reason why public policy and the transplant centers need to take a more proactive role in screening and evaluation of prospective donors. In some cases, when we’re blinded by our ‘love’ for our recipient, or our ‘need’ to be thought of as ‘noble’, ‘generous’ or ‘heroic’, the so-called (or self-appointed) experts at the transplant centers need to step in and protect us from ourselves. Anything else is simply unethical and repugnant.

Fellner, C. (1968). Twelve kidney donors JAMA: The Journal of the American Medical Association, 206 (12), 2703-2707 DOI: 10.1001/jama.206.12.2703

One reply on “The Decision To Be A Living Donor”

In my case, when it was found I was a match for my husband, he told me absolutely not. He didn’t want me going through this. I cried and pleaded, as I wanted to keep him around forever. Eventually, he gave in. 10 plus years later, we are getting a divorce. I am convinced that the anti-rejection meds he will have to take for the rest of his life worsened underlying emotional problems he already had, and made his diabetes harder to control as well. A transplant is never really “over,” either for the donor or the recipient . . .

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