Maladministration of Organs

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.