For the past 30 years a major focus of my research has been the “just caring” problem: What does it mean to be a “just” and “caring” society when we have only limited resources to meet virtually unlimited health care needs? One practical implication of the question is that the need for health care rationing is inescapable. The other practical (moral) implication is that we (all of us) must struggle with the question of how rationing decisions can be made in ways that are congruent with our moral obligations to be both just and caring.
Has Arizona satisfactorily engaged in that moral struggle in its decision to deny Medicaid coverage for seven different transplants, with the consequence that almost 100 individuals from Arizona were removed from the United Network for Organ Sharing transplant list?
We can start with the obvious. If nothing is done to reverse this decision, then all of these individuals will die prematurely as a result of the decision since the only interventions that would prolong their lives are these very expensive transplant surgeries. A Republican legislature and a Republican governor both approved this decision, no doubt with the politically necessary “heavy heart.” This certainly looks like the “death panels” denounced by Sarah Palin last year. But I will pass over in silence the hollow political rhetoric.
What moral arguments might offer some moral justification for Arizona’s decisions? The justification proffered by Arizona’s governor was that these transplants were not very successful. She claimed that 13 out of 14 patients receiving a bone marrow transplant (BMT) died within six months, and no one could find the 14th patient, who might have died as well. If this were true, this would certainly be morally relevant. There is nothing either just or reasonable about wasting limited health care resources on interventions that are very costly and that yield only very marginal medical good.
However, nothing in the medical literature seems to bear out this statistic. Ten-year survival after BMT for chronic myelogenous leukemia is about 61 percent, while 10-year survival after BMT for acute lymphoblastic leukemia is about 33 percent. There are other major types of leukemia that may have less favorable 10-year survival rates, but I was unable to find any medical reports of the miserable survival rates asserted by Arizona Medicaid.
Readers may recall the arguments in the 1990s about autologous bone marrow transplants for women with advanced breast cancer. It took more than 10 years to determine that this very costly intervention yielded no additional gain in life over less expensive available therapies, and this intervention resulted in a substantial number of premature deaths due to the riskiness of the therapy itself. If this were what we were talking about in Arizona, then Arizona would be amply justified in refusing to fund such procedures. However, the bone marrow transplants at risk in Arizona are largely for patients with leukemia who had already failed first-line therapies and who would have reasonable survival prospects with BMT.
Readers may also recall the Oregon rationing experiment in the late 1980s which drew national attention because Coby Howard, a 7-year-old boy with acute lymphoblastic leukemia, was denied the BMT needed to “save his life” by the Oregon Medicaid program. The president of the Oregon senate at that time was John Kitzhaber, a physician, who endorsed the denial of the BMT. This created something of a media firestorm at the time.
I endorsed Kitzhaber’s decision, but I do not see it as being morally comparable to what is occurring in Arizona. Kitzhaber judged that there was something less than rational and less than just about the Oregon Medicaid program at the time. The program covered only 58 percent of those below the poverty line but with a very comprehensive set of health services. Most of those services were moderately priced and effective. Others were expensive and not very effective, which is what was true at that time for BMTs for children like Coby Howard.
Kitzhaber believed a more just Medicaid program would cover 100 percent of those below the poverty level with a package of health services that were more moderately priced and effective (therefore rational), but he needed to persuade the state legislature that this expansion of Medicaid was reasonable and affordable. The result was a priority-setting process that involved about 740 condition-treatment pairs for the Medicaid program. Kitzhaber’s goal was to cover all the uninsured in the state with a comparable program, but he was unable to persuade the legislature to raise the taxes needed to underwrite that effort.
To my mind Kitzhaber’s efforts remain morally commendable. Kitzhaber, who later became governor, recognized early on that the need for health care rationing was inescapable, and that the key moral challenge was to make the necessary limit-setting decisions as openly and as justly as possible. The same cannot be said for the governor of Arizona. She is engaged in a pure cost-cutting exercise. The transplants she would deny to Medicaid patients are very costly but still cost-effective and medically effective.
Kitzhaber’s limit-setting decisions were morally justified because the resources saved (and additional resources provided by the legislature) resulted in covering another 42 percent of individuals in Oregon below the poverty line. Nothing comparable is happening in Arizona. On the contrary, Governor Brewer has strongly resisted the health reform law, which requires all state Medicaid programs to cover all those up to 133 percent of the poverty level by the year 2014.
Sometimes government officials are in severely morally constrained circumstances where cost-cutting is the only option and it will necessarily require reducing some kinds of medical services in specific clinical circumstances. That is, painful rationing decisions will have to be made. But then we should expect a public process of priority-setting that includes careful and honest moral justification for whatever rationing decisions are made. It is difficult to imagine that such a process would have yielded the outcomes endorsed by Governor Brewer.
Most patients in a long-term persistent vegetative state will have their care paid for by Medicaid, which was true with the well-publicized cases of Nancy Cruzan and Terri Schiavo. It would seem both reasonable and just that patients with no future prospects for conscious life ought to have much lower priority than the leukemia patients denied transplants in Arizona, who are likely to gain many extra years of reasonable quality life. But a decision to withdraw care from patients in a long-term persistent vegetative state would surely draw the wrath of Palin and her supporters, as it did years ago from the ideologues who so strongly resisted withdrawing feeding tubes from Terri Schiavo. It is politically understandable that Republicans would not want to re-fight that battle but it is morally indefensible.
How might we know what would be a more just and more reasonable approach to making the necessary cuts to health care costs and rationing decisions in Arizona? One reasonable answer would be that the denial of specific medical services because they were neither affordable enough nor effective enough ought to apply to all state employees, including all high-ranking state officials. If the absolute need is to balance the state budget, and if the judgment has been made that certain transplants represent a bad buy with state funds, then they are just as bad a buy for everyone employed by the state with health benefits, including the governor herself.
The honest way to make a reasonable judgment would be to ask all state employees whether they would first give up having their lives sustained in a persistent vegetative state indefinitely with public funds or whether they would prefer to give up access to various transplant surgeries, should they be faced with major organ failure or a cancer requiring a BMT. (Readers and Governor Brewer are reminded of Governor Robert Casey of Pennsylvania, who drew controversy for receiving a heart and liver transplant in 1993, just four days after going on the transplant waiting list.)
The moral virtue of this approach is that the health welfare of the poor would not be sacrificed for the sake of the middle class. Rationing decisions would then be public, self-imposed, and thoughtfully debated and justified. Certainly this would approximate a bit more what a just and caring society ought to look like when faced with limited resources to meet virtually unlimited health care needs.
Leonard M. Fleck is a professor of philosophy and medical ethics in the Center for Ethics and Humanities in the Life Sciences at Michigan State University.