A Kidney Doctor Responds: The View from Inside the Transplant System
A listener who's practiced transplant medicine since 2006 on middle-of-the-night decisions, out-of-sequence offers, and why he hopes you won't take that symbol off your license.
I am grateful to Sarah and Beth for the opportunity to add my thoughts on the recent podcast episode about organ transplantation. These words are my personal opinions and do not reflect those of my employer or any transplant organization.
I am a transplant nephrologist (kidney doctor) and have practiced since 2006. Not surprisingly, I was already quite familiar with Brian Rosenthal’s work prior to listening to this episode. It is important work, and calls attention to many systemic issues that have been raised within the transplant community for many years. But, as with most things, there is more nuance to this process.
What We Don't Know When We Check the Box
It’s easy to check the organ donor box on your driver’s license without thinking too much about how organs are treated and routed to people who need them. NYT investigative reporter Brian Rosenthal thoroughly examined the system. His complicated findings have led to congressional inquiry and meaningful progress. This is a conversation about where the sy…
There is the list. Yes, it is confusing. The most common question I get from patients is “what number am I on the list?” My answer is always “it depends.” Not all kidneys are created equal. When we get a kidney offer from our organ procurement organization (OPO), we have a very short period to decide whether to accept it or not, often with incomplete information about the donor.
We are making an educated guess as to not only whether we think the kidney will work, but also for how long, how well, and whether that makes sense for that particular patient. So yes, we do turn kidneys down, described as “too choosy.” It is important to understand that the flip side of passing on a kidney for someone is taking a kidney that doesn’t end up working well, or not at all. These are incredibly hard choices, often made in the middle of the night, during weekends, on holidays, birthdays, etc. They are made in good faith, by providers who are trying to do the right thing for their patients. Providers who are simultaneously held accountable for not taking enough organs, but also accountable if the organs they take do not perform well. We are constantly walking that tightrope, and if we veer too far one way or the other, our center will be flagged by the regulatory agencies that govern us. We don’t have a crystal ball but are often asked to behave as if we do.
The point was made that patients are mostly unaware that organs were offered for them that were not accepted. There are many times that marginal kidneys are offered for patients on our list that we would never consider. One kidney may be declined for multiple patients on our list before it is placed somewhere else. The reasons kidneys are declined are complicated and take time to explain. I am not arguing against transparency, I would love to be able to have these conversations with all the patients on our list and answer all their questions about why we turned down a particular kidney for them. Currently there is just not the time or manpower to do it in a meaningful way.
One of the major issues raised in the article and discussed was the out of sequence offers, i.e. “skipping down the list.” This is an area that absolutely needs reform, and I am glad it is improving. With the OPOs under regulatory pressure to place organs efficiently, there are very marginal kidneys that only the most aggressive transplant centers will take. That is how some of this behavior started, out of the desire to get those kidneys where they would be used. Most OPOs are legitimately trying to find the best place for organs to go. Those who aren’t should be identified and dealt with. No one is arguing about that. But we need to find a way to get those harder-to-place kidneys to those centers quickly, without making the entire system unfair and eroding trust. It is a work in progress, but I believe progress is happening.
Mostly, I want listeners to know that this is a flawed system with deeply caring people that are doing their best within it.
Of course, the most disturbing aspect of this conversation is the instances where patients were taken for organ procurement that possibly did not meet criteria for brain death. This is exceedingly rare, but of course even one case is unacceptable. I welcome all safeguards in this area, and increased oversight here is necessary and welcome.
Mostly, I want listeners to know that this is a flawed system with deeply caring people that are doing their best within it. I have yet to meet a transplant surgeon, physician, nurse, procurement team, etc. that wishes harm upon a recipient, donor, or donor family. Sadly, they probably exist, but I think they are infinitely rarer than you might think after hearing this reporting. I worry that this may lead to people removing the organ donation symbol from their drivers’ licenses, and I was devastated to learn that Sarah had already done so (though glad she has informed her family of her wishes to consider donation). Organ donation is a beautiful way to give someone else life beyond your own death. Even with the challenges facing the transplant community, our priority is to honor these gifts, and the responsibility to steward them is not taken lightly. Please consider organ donation if you haven’t already. As my favorite bumper sticker says, “Don’t take your organs to heaven. Heaven knows we need them here.”
I would love to continue this conversation. I can be reached at ktrue72@gmail.com and I will be in Minneapolis in September! Hope to see you there!
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