Saturday, November 7, 2009

Nicholas Kristof on "Unhealthy America" - One Grand Slam and One Stikeout

I greatly admire New York Times columnist Nicholas Kristof's reportorial thoroughness and passion for social justice. So I wasn't surprised that I agreed with the opening passage in his November 5 column on "Unhealthy America":

The moment of truth for health care is at hand, and the distortion that perhaps gets the most traction is this:

We have the greatest health care system in the world. Sure, it has flaws, but it saves lives in ways that other countries can only dream of. Abroad, people sit on waiting lists for months, so why should we squander billions of dollars to mess with a system that is the envy of the world? As Senator Richard Shelby of Alabama puts it, President Obama’s plans amount to “the first step in destroying the best health care system the world has ever known.”

That self-aggrandizing delusion may be the single greatest myth in the health care debate...
Kristof goes on to cite multiple studies that show just how mediocre our overall "system" is. This is educative journalism at its best.

Then he stumbled:

I regularly receive heartbreaking e-mails from readers simultaneously combating the predations of disease and insurers. One correspondent, Linda, told me how she had been diagnosed earlier this year with abdominal and bladder cancer — leading to battles with her insurance company.

“I will never forget standing outside the chemo treatment room knowing that the medication needed to save my life was only a few feet away, but that because I had private insurance it wasn’t available to me,” Linda wrote. “I read a comment from someone saying that they didn’t want a faceless government bureaucrat deciding if they would or would not get treatment. Well, a faceless bureaucrat from my private insurance made the decision that I wouldn’t get treatment and that I wasn’t worth saving.”

The flow of Kristof's article makes it clear that he is presenting Linda's painful story as an indictment of the inurer. But there are three basic possibilities for understanding Linda's tragic situation, only one of which is malfeasance. Kristof invites readers to see the insurer as guilty as charged, just one more example of insurer "villainy."

This is bad journalism, especially coming from a brilliant and ordinarily trustworthy reporter like Kristof. He missed an opportunity to educate his readers by making these important distinctions:

  1. The medication Linda wants is a validated, "evidence-based" form of chemotherapy and the insurer knows this, but chooses not to cover it, duplicitously claiming that it is not "medically necessary." A court that found an insurer guilty of doing this would, and should, levy hefty punitive damages.
  2. There are new findings about the medication or about Linda's particular condition that the insurer has not given proper weight to. In this situation, an appeal that documents the rationale for why the medication should be seen as effective should succeed. I have been part of an insurance appeals process and have seen numerous situations over the years in which decisions were seen in a new light when new information was introduced.
  3. The medication Linda wants is ineffective, but an uninformed or overzealous physician has told her it's what she needs. In the 1990s, bone marrow transplant for advanced breast cancer was covered on the basis of faith and hope. Insurers who refused to cover it were sued. In a famous case (Fox v Healthnet) the plaintiff's family was awarded huge punitive damages. The treatment was ultimately found to be ineffective, but only after 30,00 women had received it, often with the result of increased suffering and shortened survival. (False Hope, by Richard Rettig and others describes the the painful saga in detail.) If this is the situation Linda should receive clear explanation and compassionate care, but not agreement that the insurer has committed a moral crime. And the physicians who are misleading her should receive a combination of reeducation and chastisement for giving such bad advice.

The fact that one of our best journalists is contributing to our national failure to understand the need for clinically informed, ethically justifiable limits says a lot about how difficult the learning curve will be. As I've often said in this blog, even if Mother Theresa was in charge of an insurance plan, she would not cover every cancer chemotherapy that we petition for.

(Norman Daniels and I discuss these issues in detail in Setting Limits Fairly.)


A Cancer Doctor said...

I work in a rural community. Many of my patients do not have insurance or have minimal insurance. Some people buy cheap insurance only to find that it covers $500 of chemotherapy, which is basically non-insurance. Honest -- those types of policies are out there. It's in the contract that the patient signs. There is no appeal. Our office works hard at treating these patients, but although these patients are "insured" they are insured for very little.

Jim Sabin said...

Dear Cancer Doctor -

What a painful situation! Unfortunately it's not uncommon. You and your office are doing heroic work, since specialists tend to clump in urban areas. Congratulations, and thank you, for what you do!

If we simply looked at our national expenditures on cancer care we would see (a) tremendous waste in our use of very costly agents for which (b) there isn't a shred of evidence for effectiveness prescribed for (c) patients who are close to death and (d) would probably not want to be "flogged" with the treatment if they knew how unlikely any benefit was. And, alongside of this combination of waste and harm we would see what you describe - people who can't afford access to standard effective treatment that could make a huge difference in their lives.

The American Society of Clinical Oncologists has been documenting this problem and conducting advocacy. It is important for the group to know about the situations you are describing.

Thank you for your comment. And - keep up the good work!



Anonymous said...

Very appropriate that you should refer to Mother Theresa in this context. As an author of medical policy, I struggle with these issues almost daily. The huge gap between oncologist and patient hopes and what the drugs can actually deliver is one of the toughest problems. We consulted the ethicist at a local Catholic health system, who simply explained the heart of the issue with two terms, not surprisingly of Latin derivation:

Benevolence, bene (good) + volo (to desire), embraces all sufferers with open arms. We want to help anyone that has a medical need.

Beneficence (bene + facio (to do) means actually doing good. Here your work in defining our stewardship responsibility comes in. Beneficence, the ethicist says, must sometimes say NO, because we simply cannot do all the good we wish we could. As you stated, often the problems is the lack of therapeutic tools adequate to the challenge. Other times we are forced to choose between helping one person at very high cost and helping many at a lower cost. Neither government nor private insurance can solve the latter problem because we all have limited budgets.

One of the tough questions no one wants to answer is defining the "minimum meaningful" life extension of a dying patient. The NICE/NHS tried to do this with cost-utility analysis and received a clear reprimand from the British public. This would make an excellent topic for a future blog.

As a psychiatrist, you will appreciate the role of the emerging palliative care movement in helping patients with incurable metastatic cancer. Rather than continuing to assault their bodies with the latest quasi-experimental treatment, we would much better serve them by stepping back and looking at the individual from a more holistic perspective. The question that often doesn't get adequate attention is, what else would you like to do with the remaining time you have to end your life well? This must be asked while the patient's functional status is still reasonably good, so that they can enjoy time with family, travel, do estate planning, complete unfinished projects or deal with unresolved spiritual issues.

As clinicians, we have set ourselves unrealistic standards. We define success narrowly as eliminating a specific disease or symptom, returning the patient to good physical health. We must learn to accept our inability to be omnipotent and redefine success in such cases.

The insurance company medical directors I know are good hearted people trying to help anyone they can. If overlooked information is brought to their attention, either patient history or clinical trial data, medical necessity is usually established without delay. The $500 benefit described by the previous commenter is a sad result of the rising cost of health insurance, driven mostly by increasing costs of care, not greedy insurers. If we cannot address this, neither government nor private sector will achieve more than temporary stop gaps.

Unfortunately, no one wants to be the bearer of these bad tidings to the public. It would be political suicide. It is much easier for politicians to take a benevolent posture and let others break the bad news. Thanks for this column and the work that you and Dr. Daniels have done to articulate this problem. I wish you had as many readers as the NY Times.

Jim Sabin said...

Dear Anonymous -

Thank you for your very thoughtful, experience-based comments.

How wise of you to consult with an ethicist about the strain-laden work that you do! I agree fully with the perspective the Catholic consultant gave. You might be interested in the September 10, 2007 post I wrote - "A Jewish Fan of Catholic Organizational Ethics." Apart from my disagreement with the standard Catholic positions on reproductive ethics I find the Catholic tradition of ethics very wise and humane.

I've learned a lot from my colleagues in palliative care over the years. I agree that they have a lot to teach us about providing holistic, patient-centered care.

My one disagreement is with your take on the British attitude toward NICE. There are constant arguments in the UK about NICE's decisions and the question of whether they have set the hurdle for cost effectiveness about right, too low or too high. But, unlike us in the U.S., there appears to be broad acceptance of what NICE is trying to do.

Thank you for the kind comment about the work Norman Daniels and I have done. Not surprisingly, interest in that work has been limited in the U.S. but quite high in countries like England that have universal insurance coverage and an overall budget for health care.