Maladministration of Organs

by Cosma Shalizi on August 4, 2006

Kieran’s post about his book on organ donation gives me a hook to write something about the other end of the system, about organ recipients and the institutions which are supposed to match them up with donated organs. More specifically, how one such institution, the Kaiser HMO of Northern California, quite spectacularly failed several thousand people who were depending on them, by not matching them up. The story has been around since early May, when it was broken by Charles Ornstein and Tracy Weber in the Los Angeles Times (cached here), since confirmed by an investigation by Medicare/Medicaid. It doesn’t seem to have gotten all that much attention among the blogs, but it’s outrageous, and deserves, for that reason alone, to be better known.

(I was hoping to end my guest-blogging here by kvetching about econophysics, which is merely trivial; but that will have to wait until next week, back at my own blog.)

Kaiser is a very large and old HMO, with a huge presence in the Bay Area and northern California. (In fact it was one of the very first HMOs, started by Kaiser Steel during WWII as a way of attracting workers to its foundries and shipyards when wages were frozen.) It actually consists of non-profit health plans and hospitals, and for-profit physicians’ partnerships, the Permanente Medical Groups; normally, patients in the health plans have to go to physicians in the groups to have their medical expenses covered. One notable exception, up until 2004, was the 1500—2000 Kaiser patients in northern California who needed kidney transplants because of renal failure: those procedures were sub-contracted to the hospitals at UCSF and UC Davis, which also managed the patients’ places on the waiting list.

That last bit requires some explanation. Once organs are donated, they need to be matched up to recipients. This is done by an organization called the United Network for Organ Sharing, which tries to trade off urgency, seniority (i.e., time spent waiting for an organ), proximity and compatibility (since the closer the match between the donor’s immune system and the recipient’s, the less problems from rejection). There is a heavy weight put on seniority, though especially close immunological matches can over-ride it. Each transplant center is responsible for keeping the network up-to-date about their patients who need organs, their immunological profiles, and their time spent on the waiting list.

What seems to have happened is that in 2002, a transplant surgeon named Arturo Martinez proposed to Kaiser that it could save money, and increase the utilization of its hospitals’ surgical capacity, by bringing the kidney transplant program in-house, and Kaiser agreed, with Martinez becoming head transplant surgeon. (It would be unfair, at this point, to say that Kaiser did this because it meant more business for the for-profit Permanente Medical Group, but it’s hard to imagine that counted against the proposal.) As of mid-2004, Kaiser patients on the waiting list were informed that they would no longer be covered for transplants at UCSF or UC Davis, though they were free to go ahead and have them if they could come up with the money (roughly $100,000).

So far, all this is maybe a little self-serving on Kaiser’s part, but not, in itself, appalling. (It’s certainly more than legitimate for health-care organizations to try to save money.) What happened, though, was that Kaiser completely screwed up the program. Remember that organs are allocated (basically) through the UNOS system. The patients were being removed from the listings under the university hospitals, and being added to the listings under the new Kaiser transplant program. Unless this was done correctly, this would mean that they’d look like new names on the list, and so all of their accumulated waiting time, one of the main determinants of priority, would vanish. This happened to a huge number of people on the list, basically reducing the chance that they’d get a kidney to next to nothing. This becomes less surprising when one learns that Kaiser never consulted UNOS about the massive transfer of patients it was planning, and “placed responsibility for submitting patient data … in the hands of a single clerk who had one hour of telephone training on UNOS’s database”, though not any more excusable. Needless to say, patients were not told that by staying with Kaiser, they were losing their place on the lists, and thereby reducing their odds of survival. Some of them, at least, seem to have been assured that they were keeping their places, when that wasn’t true, though this is less clear to me.

Losing seniority on the transplant lists wasn’t the only problem. Kaiser did very few transplants, compared to the number of organs which were available. This happened in part because they just didn’t have the capacity to keep up with their many patients (at one point they were down to a single nephrologist for the whole program, who was also supposed to be its medical overseer), and in part because of what seems to have been mis-placed perfectionism or caution. These combined to the point of repeatedly turning down “zero mismatch” kidneys, ones where the likely compatibility over-rode considerations of seniority. This happened several dozen times at least — twice for one patient alone. Again, needless to say, patients weren’t told about this. In a “it’s not a bug, it’s a feature” moment, Kaiser initially attempted to defend its program by pointing out how few patients had died after transplants — since they’d done so few.

What strikes me as especially outrageous about all this is that the people being screwed over were people who needed new kidneys. To state the obvious, anyone who needs an organ transplant is very ill. It’s maybe less obvious that being that ill is a full-time job. One of the vital parts of the body is no longer working; to substitute for it requires extraordinarily complicated, time-consuming and generally unpleasant procedures. People who need new kidneys are people who are kept alive by dialysis, which is, indeed, complicated, time-consuming, often painful, almost always exhausting, and carries a non-trivial risk of infections, possibly fatal. People who need new kidneys are also often people who are very ill in other ways, since it’s not that common for both your kidneys to just stop working if nothing else is going on. (Kidney problems are, for instance, a not-uncommon complication of diabetes, and of high blood pressure. Dialysis, naturally, messes with blood pressure, adding yet another variable to monitor and regulate.) Simply staying alive, when you are multiply-sick person with organ failure, can pretty much demand all the time and attention you have to give, and a fair chunk of your loved ones’ as well. (There are good reasons why the families of people in situations like this tend to fall ill themselves.) You are certainly not in a position to check up on whether your medical organization has, through incompetence, messed up your position on the transplant lists. (Some Kaiser patients actually tried to keep up with their place on the lists, but were given the run-around.) And as for switching to another medical organization, do please show me the company which will extend coverage to someone who needs a new kidney, at a price which can be afforded by someone who needs a new kidney.

Since the Times broke the story, there’s been some improvement. The doctor who was medical head of the program, and apparently at least partly responsible for snafu of not transferring patients’ time, Sharon Inokuchi, has been relieved of her administrative duties. (In fact, if memory serves, she left Kaiser, but now I can’t find where I think i read that.) The program has been investigated by the Center for Medicare and Medicaid Services, which basically confirmed the newspaper reports, and forced it to promise major changes; it could still lose its eligibility for funding under those programs. The California state agency which regulates managed care is still, I believe, investigating. There’s talk of large fines, and there will certainly be lawsuits. All of this is to the good; it’s certainly better than nothing. But still, thinking about this makes me angry: Kaiser had a duty towards many very sick people, who were in a very poor position to look after themselves. It failed in that duty quite dramatically. In any organ transplant program, patients will die while waiting for a match. In most kidney transplant programs, though, about twice as many patients receive transplants as die while waiting; Kaiser managed to reverse that ratio. While it’s hard, in the nature of things, to identify any one patient who’s died and say “They would have lived, if only Kaiser hadn’t done this”, it’s almost certain that more of these people have died than would have otherwise. I don’t have a better remedy to propose than fines or lawsuits or institutional tinkering, but they all seem horribly inadequate.

{ 16 comments }

1

dearieme 08.04.06 at 4:50 pm

I went into a British NHS hospital to be assessed for a heart transplant. It turned out that my own heart had recovered sufficiently that it would be wiser to leave it in place. “Just as well” said the doc “at your height and blood group, you’d almost no chance of getting one anyway.” I looked around the ward: they were almost all little chaps.

2

Steve LaBonne 08.04.06 at 4:53 pm

Years ago when I was a postdoc at Case Western I had to suffer through a period of “coverage” by Kaiser-Permanente of Ohio. They are THE PITS. Run, don’t walk, in the opposite direction if you’re ever offered a job in which a Kaiser HMO is your only health insurance choice.

3

mpowell 08.04.06 at 6:00 pm

A class action lawsuit on behalf of the families of deceased patients seems like the most likely legal result. I suppose that is pretty inadequate. But that’s going to be a common problen when you’re talking about health care and cost-cutting measures that run south. Unfortunately, cost-cutting measures are always required at some level and sometimes its going to get screwed up. Kaiser has a particularly bad reputation for it.

4

eudoxis 08.04.06 at 7:42 pm

The demand for kidneys outpaces supply by about a factor of 20. There is no indication that available kidneys in California were not used during this fiasco, they simply ended up in a different set of patients. Nor is there any indication of medical malpractice, in fact, the transplants that were done at KP were very successful. While there is no excuse for bureaucratic incompetence, in essence this case is about a seemingly inequitable shuffling of the priority list. A list that is not very equitable to begin with. Why is seniority a top indication of need? There is real tragedy in all this but it’s larger than this case and may even be addressed in Kieran’s book.

5

arthur 08.04.06 at 9:32 pm

Because of some quirks in the medicare rules, kidney dialysis is incredibly profitable for both doctors and hospitals. You might expect that would make it unprofitable for insuraers, but in fact the expense is paid by medicare for almost everyone, even people who don’t otherwise qualify for medicare. Kidney transplants are only averagely profitable, and when successful they mark the end of the billing to medicare. Draw your own conclusions.

6

John Emerson 08.05.06 at 7:29 am

I was with Kaiser for 5-10 years and was perfectly happy with them. Fortunately, I never got sick in any way during that period.

Eudoxis, that logic would justify almost anything. Minimally, we have a case here where a provider killed a number of its own patients because of bureaucratic carelessness. Maximally, they killed clients for fiscal reasons. Under these particular scarcity circumstances, it may indeed be that other equally meritorious patients elsewhere benefitted from the death of the Kaiser patients, but that doesn’t really exonerate Kaiser.

7

Barry 08.05.06 at 9:31 am

edudoxix: “no medical malpractice…..”.

BWAHAHAHAHAHAHAHAHAHAHA!

8

Steve LaBonne 08.05.06 at 9:37 am

I was lucky never to get really sick either but I was terrified of doing so and having no choice but to go to their crappy hospital (that too, in a city full of world-class hospitals.) And I wasn’t too impressed with the bottom-of-the-barrel PA’s I had to see as primary care providers, or the severely limited network of specialists.

9

eudoxis 08.05.06 at 10:12 am

Let’s say that UCSF resorted their list based on a maximally efficient algorithm that would lead to a net reduction in morbidity after transplant. The ethical dilemma is the same, some people with high priority are shifted to low priority.

10

bi 08.05.06 at 10:27 am

eudoxis: Let’s say you stop using silly thought experiments.

11

eudoxis 08.05.06 at 10:56 am

Those are the realities of the ways in which those waiting lists are sorted. There are many inequities because of the nature of supply and demand. If a patient is someone famous, or even just white, or male, they have a greater probability of receiving a kidney than the others on the list.

The patients at PK were forced into a narrowed pipeline with no free recourse. There is something grossly injust about that. However, if this injustice is viewed as “killing”, then, to be consistent, every patient who doesn’t get a kidney when they need one is being killed by a deliberate decision.

12

jet 08.05.06 at 4:31 pm

Eudoxis,
There are inequities and then there are inequities declared the best possible solution by society. One set of inequities applied to everyone outside of Kaiser HMO of Northern California. And another set of inequities, far less fair, applied to everyone inside Kaiser HMO of Northern California.

Either you don’t understand that and think all inequities are equally unfair, or you are a jury consultant scouring the web for ways to acid test possible defenses for Kaiser’s soon to be share plummeting stock prices. Since no one could be that stupid, I’m going with hypothesis number two.

13

ned510 08.05.06 at 5:36 pm

you are right, this is important, but seems to have been ignored. i used to work at kaiser as an internist, and am not surprised by the story. when i first started at kaiser, people said,”why do you want to work at kaiser?” later some of those same people said, “how can i work at kaiser?” over the years things changed. when i started and for several years there after the head of the department was always one of the best clinicians; now there are physician- administrators who spend the bulk of their time in administration, are not known for clinical skills, and the bottom line has replaced primum non nocere. the second reason is that in recent years kaiser has grown, and received awards for quality of care. this led to the head of my department saying that since we were the largest provider in the community, the way kaiser did things thus was the community standard. references to the way things were done
ouside of kaiser didn’t count.
the whole thing is terribly sad.

14

eudoxis 08.05.06 at 6:33 pm

Okay, the poor management of the kidney transplant program at Kaiser most likely entailed multiple problems, leading to poor patient care and, possibly, wrongful deaths. I’m not defending Kaiser. I am looking at organ allocation in a broader context and with some sympathy for those who die while on the waiting list during the normal course of events, whose families won’t be lucky enough to benefit from a settlement. I just don’t think that the equity of any kind of allocation system is ethically as straightforward as some of you seem to think.

15

Barry 08.05.06 at 6:41 pm

Jet, you’re probably wrong. I’ve yet to see something on CT where some guy doesn’t waltz in and approve of it.

16

Ardeth 08.06.06 at 11:51 am

This is my first blog comment. I am, what is called in the business, a donor Mom. That means my child died, and her organs were donated. About a year after her death, I used my experience to volunteer to educate in the local high school Drivers’ Ed classes, so that students would know what they were signing up for, IF they put ORGAN DONOR on their licenses. Since I was a teacher/principal, the local Organ Procurement Agency was happy to get my services. I have since spent a lot of time educating myself on the fascinating/heart-breaking process called organ donation. You have said many correct things on this blog. I only wish to correct one mistake which is crucial to people’s understanding. IN THE UNOS SYSTEM, HOW MUCH MONEY YOU HAVE, OR THE COLOR OF YOUR SKIN DOES NOT GIVE YOU PREFERENCE FOR RECEIVING AN ORGAN!! There are inherent problems in any system, and the ones where people’s lives are at stake are especially galling. UNOS is not perfect, but it is the fairest, most complexly-complete one that really caring, educated medical people can contrive to this point. It will need to change (and so will the current health care payment systems) with the continued research findings that are a part of transplantation, and with new issues that will continue to arise, such as directed living donation. Yet, I have found in the 13 years since my daughter’s death, that this area of continuously evolving medicine and all the “people stories” that are associated with the process are inspiring.
P.S. Just as I tell all my Drivers’ Ed classes, if you don’t want to be an organ donor, I totally respect your wishes. I just want you to KNOW what you are deciding.

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