Monday, January 7, 2008

Good Politics but Bad Ethics in New Hampshire

On December 20, 2007, in California, 17 year old Nataline Sarkisyan died of leukemia and liver failure. On January 6, in New Hampshire, Nataline’s parents spoke at a John Edwards rally.

Just before Thanksgiving, Nataline received a bone marrow transplant from her brother. Soon after, she went into liver failure. Her doctors at UCLA recommended a liver transplant, reporting their belief that she would have a 65% chance of living for six months. Natline’s insurer, Cigna, refused coverage, reporting that their own medical experts and an outside transplant surgeon concluded that the procedure was “experimental,” and therefore not covered.

Interestingly, in response to the public outcry, Cigna reversed itself on grounds of “empathy for the family.” But Nataline died before the procedure could be tried. It is reported that the local attorney general may press manslaughter charges against Cigna!

I have no expertise about liver transplantation for patients with leukemia who have had a bone marrow transplant. But neither does Senator Edwards. This looks like a situation in which the “left” is making politics out of a tragedy, just as the “right” did with Terri Schiavo.

Every health system has to set limits. This would be true even if Mother Theresa were the health czar. It is entirely reasonable to question the evidence basis for UCLA’s proposal or Cigna’s denial. Similarly, it is entirely reasonable to argue that the bar for evidence should be lower in last chance situations than in other domains of care. But Edwards, who I admire and largely agree with politically, does the public a disservice by presenting the denial as a moral crime.

Edwards favors extending Medicare to a wider range of citizens. If he ends up as president, it will be interesting to see how he addresses the issue of limits. As Oregon Governor John Kitzhaber recognized 20 years ago, universal coverage is impossible without limits. No limits, no universality. It is that simple.

True leaders must be educators. Understanding the ethical necessity for limits is counter-intuitive for those who are not familiar with the health sector. Edwards may have done an effective piece of campaigning yesterday, but he was not providing the kind of ethical leadership that improvement of our health system requires.

This is especially unfortunate. Edwards is a superb communicator -- just the kind of voice we need to help us come to grips with the sad fact that health care limits, well set, are an ethical necessity, not a moral abomination.


Anonymous said...

Hi Jim,
Your analysis is excellent in comparing Edwards’ exploitation of this case to the Terry Schiavo case, and the mileage that Trent Lott, Newt Gingrich, and, most notably, Bill Frist wrung out of that unfortunate scenario.

I also agree that there is a need for a practical and ethical set of standards that govern the level of health care that is available to every citizen of this country. However noble the efforts are that aim to insure every American citizen may be, they only tackle part of our health care crisis. In putting the emphasis on “minimum creditable coverage,” legislators are ignoring, by virtue of political convenience (or necessity), the idea “maximum reasonable coverage.”

In response to an earlier post on this blog, I made reference to the need for a certain set of ideals that are sorely missing from the national debate on health care reform. While most politicians, and in turn, political pundits, clamor for the need to reign in spending and deliver cost-effective care, notably absent from the debate is the idea of delivering the most effective care available to everyone in need. This is a sort of “top down” approach to addressing the problem with health care delivery. It is also, in many regards, the most controversial ethical debate in health care: the idea of setting expectations as to exactly what level of care an optimal system will provide.

At the height of the “managed care era” in the 1990s, the policy debate was centered on the sphere of influence exerted by private insurers – most notably HMOs – and whether their delivery system could survive in a free market, for-profit environment. It was during this period that health care costs truly skyrocketed, and inflation in the health care market outpaced that of the rest of the economy by roughly a 3 to 1 ratio. Naturally, the alarms began to sound, and calls for reform began.

President Bill Clinton, unsuccessful in his 1993 attempt to overhaul the national health care system, delivered on July 16th, 1998 a speech that would serve well today, if delivered by his wife Hillary, who now herself seeks the presidency. The speech was originally meant to highlight the need for the expansion of the Patient’s Bill of Rights. One particular excerpt, however, would fit almost perfectly into a current speech addressing the need for practical boundaries in health care delivery:

“Our job, representing all the American people, is not to abolish managed care. Our job is to restore managed care to its proper role in American life, which is to give us the most efficient and cost-effective system possible consistent with our first goal, which is -- managed care or regular care, the first goal is quality health care for the American people. That is our job.”

This brings us to what I feel is the crux of the health care policy debate: Many Americans are too quick to equate “health care reform” with “health insurance reform.” There is a responsibility to define, establish and maintain an optimal American health care system that falls to every American, not only those in the insurance industry. If we consider the origins of what we, as Americans, consider to be “typical” health insurance – that is, employer or state provided, premium-based coverage, we can then grasp the full extent, and full limitations of such a system. In 1956, E.J. Faulkner, then-president of the Health Insurance Association of America, summed this up perfectly when he wrote “No one group or organization can claim credit for fulfilling-or approaching fulfillment-of all the public's needs for protection against the cost of ill health.”

Health insurance is just part of the equation in the movement towards true and lasting health care reform. Just as then President Clinton said in 1998, and his wife continues to echo today on the campaign trail: true success in the endeavors towards health care reform will be achieved only through a willing and committed partnership between all entities and institutions of the collected health care fields and industries. This must include leadership from the medical science community that is unadulterated by profit, and seeks only to realistically set the medical parameters of what the world’s best health care delivery system could ultimately provide to every American citizen.

The time to act on this is now. The stage is set for change, and the debate has begun. I only hope that true change can occur before further frustration stems from another case such as the Sarkysian’s. Again I will point to the words of former President Bill Clinton who, by coincidence, addressed similar problems in the same 1998 speech quoted previously:

“…the thing that struck me yesterday at this hearing that we had at the AMA building was in three cases where people died, in all three cases, what the doctor told the patient the patient needed was ultimately approved. And in all three cases, it was approved so late that it was too late to do the procedure, so they died anyway. So you can write all the guarantees you want into the law here in Washington, and if nobody can enforce them, the delay in the system will still cause people to die. We have to do something about this…”

Jim Sabin said...

Hi Ian -

Thank you for this very scholarly and thoughtful comment, which is really an essay! I agree completely with your emphasis on the importance of talking honestly about (a) health care ideals, (b) the concept of efficient care, and (c) the inevitable need for limits. I especially like your recommendation that we reframe "minimum creditable coverage" as "maximum reasonable coverage." The latter is a positive message of hope, which could have some traction in a political campaign.

And, special thanks for the excerpt from President Clinton's 1998 speech. He had the communication skills to help the U.S. public understand the need to manage care in a clinically informed, ethically guided manner.

I believe, however, that health care has too much nuanced variation among individual situations to allow an actual listing of the content of "maximum reasonable coverage." A treatment, like liver transplant, could be obviously right for A but not warranted for B. (That is what Cigna was claiming.) In "Setting Limits Fairly," the book I wrote with Norman Daniels, we concluded that establishing "maximum reasonable coverage" requires a fair process. (Please excuse this advertisement, but the book will be out in a second edition in a month or two.)

Again, thank you for all of your illuminating and provocative comments!



Anonymous said...

Hi Jim,

Thanks for the feedback. I noticed that this entry was mentioned in Sunday's Philadelphia Enquirer. It's nice to see the blog getting some well-deserved recognition!

Keep up the great work,

Ian M