Map of life expectancy at birth from Global Education Project.

Thursday, January 13, 2005

The Rule of Rescue

It has no doubt occurred to readers that there are some knotty ethical problems underlying some of the issues we have discussed recently. In The Silent Tsunami I pointed out that 29,000 children around the world, mostly in poor countries, die every day from readily preventable causes -- a tusnami's worth every two or three days -- but that there is no outpouring of media attention, public or private donations, or aircraft carriers heading out to rescue them. In The Crux of the Matter I pointed out that we'll readily spend hundreds of thousands of dollars on organ transplants and other procedures that may give a few months of limited life to someone, while we don't spend much smaller sums that could prevent many cases of premature illness and death.

There are many comparable situations. A caravan city of TV vans will materialize in some country town when a child falls down a well. Although children suffer accidents every day, we can't predict which ones it will happen to and we pay little attention when it does.

Consider the case of Belynda Dunn, a 42 year old woman who worked as a health educator and counselor for AIDS Action Committee. She was infected with HIV and Hepatitis C Virus (HCV).
[1] Her physician determined that she had end-stage liver disease. He told her that she would die within a few months without a liver transplant.

However, Ms. Dunn's insurance company, Neighborhood Health Plan, refused to pay for the transplant, on the grounds that the procedure was experimental in people with HIV. NHP is a non-profit company that does most of its business with MassHealth, the state's publicly funded insurance program which covers Medicaid beneficiaries and people who are eligible for other public health insurance programs such as the Supplemental Children's Health Insurance Program. NHP also has commercial clients, mostly non-profit organizations like AIDS Action Committee that purchase coverage for their employees.

The next day, Aids Action Committee called a press conference to denounce the decision. Boston Mayor Tom Menino announced the creation of a fund called the Belynda Dunn Life Fund, to pay for Ms. Dunn's transplant and, he said, others in similar circumstances. NHP then contributed $100,000 to the fund, toward an estimated total cost of $250,000-300,000. Other donors soon brought the fund up to over $200,000. Speaking from her hospital bed, Ms. Dunn told reporters, "It isn't right that an insurance company can decide whether someone lives or dies." Later, it developed that the amount needed was actually $500,000. The surgery would not be performed unless the full amount could be raised. Ms. Dunn's supporters continued to campaign to raise the money, or force the insurance company to pay. As it turned out, in the end a suitable donor could not be found and Ms. Dunn died.

Now, for $500,000, many cases of HIV could be prevented, and for that matter, most if not all of the 29,000 children who died avoidably on the same day Belynda Dunn died could have been saved. But neither Mayor Menino, AIDS Action Committee, Neighborhood Health Plan, or the donors to Ms. Dunn's charitable fund thought to help them. And consider this -- if NHP had paid the $500,000 for Ms. Dunn's liver transplant, where would the money have come from? It would have meant that several hundred poor children could not be covered by the SCHIP program (which is not an entitlement but has a budgetary limit).

A.R. Jonsen, in 1986, coined the term "The Rule of Rescue." John McKie and Jeff Richardson succinctly define this as "The imperative to rescue identifiable individuals facing avoidable death, without giving much thought to the opportunity cost of doing so." Note the key phrase, "identifiable individuals." Statistics don't move us. Those 29,000 children dying every day are scattered around the world. We don't know who they are, we don't know where to find them. In the tsunami, however, the dead and injured and orphaned children were all conveniently piled up together where TV reporters could find them and cameras could film them, just as they could interview Belynda Dunn but could not identify which children would be denied insurance by NHP because of her liver transplant.

So how about this. Is it wrong to let an identifiable suffer or die who it is possible to save? Was NHP wrong to refuse to pay for the procedure? Were they callous, were they inhumane? Is there a way out of this problem?

I'm asking, not telling.

[1] People are often co-infected with these two viruses, which have similar modes of transmission. HCV infection is usually incurable, but the virus can remain latent and not cause problems for some time. When the disease does progress, it can destroy the liver, as in Ms. Dunn's case.


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