Map of life expectancy at birth from Global Education Project.

Friday, January 14, 2005

More on the Rule of Rescue

The excellent comments on the previous post made me realize that the Rescue problem often presents as at least two entangled ethical questions. The commenters tend to refer to cases in which the potential state of life of the rescued person is likely to be very poor, possibly very short, possibly even questionably a living state at all.

And these are indeed the kinds of situations in which the Rule of Rescue usually comes to public attention, as in the Terry Schiavo case in Florida. As most of you will remember, this is a woman who is in a so-called persistent vegetative state following a heart attack, whose husband wished to have her feeding tube removed. Her parents objected, and Jeb Bush got a special law passed specifically for this case that permitted him to overrule Mr. Schiavo's wishes. How people feel about this case largely depends on how they define "human life," and what value they place on the continuation of Terry Schiavo's biological functions (to put it perhaps too starkly for some).

While I encourage continued discussion of the question of how we define human life and how we should value life that is very limited, the Rule of Rescue can also be problematic, sometimes even more so, when the subject actually has good prospects for life after rescue, but the cost of rescue is high.

The problem arises when we try to apply utilitarian ethics. Essentially, we have limited resources, and to most people it seems like common sense that we should try to expend those resources to somehow maximize the total good. Of course what we think constitutes maximum good depends on our values, so welfare economists try to quantify the value of states of health and longevity by surveying the public. "How many days or months of total life would you give up to avoid being deaf and blind for five years?" and similar kinds of questions. They actually came up with a unit called a Quality Adjusted Life Year, or QUALY. For example, a year on dialysis is worth .57 of a year of perfect health.

So, let's go back to Belynda Dunn. Although she was HIV+, she did not have AIDS and with the benefit of antiretroviral medications, she had a good prospect of many years of productive life had she received her liver transplant. Her health would not have been perfect of course. Anti-retroviral drugs can have very unpleasant side effects, they usually don't work forever to stop the progression of HIV disease, and she would have had to take immunosuppressive drugs, increasing her risk of suffering from immunodeficiency and eventually, AIDS. Nevertheless she did not want to die and she was fully prepared to accept life on those terms. Her friends also wanted her to live.

The problem here is not that she was beyond help. Tthe problem, to put it bluntly once again, is that $500,000 is a lot of money. Many people say simply that human life is beyond monetary value, that if we can save someone's life we have a moral obligation to do it and money be damned. But in fact, the people who say that don't really mean it. Those 29,000 children under five are dying every day (See "The Silent Tsunami") who could each be saved for a few dollars. But the people who insisted on spending $500,000 for Ms. Dunn's liver never even thought about coming up with five dollars for an anonymous infant in Mozambique who hadn't had a measles shot.

There is a lot to think about here. If we sat down and tried to figure out how to spend our resources to maximize the QUALYs of all humanity, or just our own community if that's where our ethics lead us, we would have to let a lot of sick people, who could be cured, die. We would allocate our resources to the youngest and healthiest people, where we would get the most QUALY bang for our buck by doing inexpensive things to prevent sickness and extend good health, and we would spend relatively little on the sick and the old. But in fact we do the opposite.

Are we doing right, or wrong?


Anonymous said...

I knew Belynda well, and she died as much from failed transplants, as she did from the process of being rejected for her transplant, and then having to leave her place of support in MA, to stay in Pittsburgh and wait on the transplant list for months in isolation from her community.

The author states: "and with the benefit of antiretroviral medications..."

ART was of no benefit to Belynda, whose Hep-C condition was discovered as a result of having such an adverse reaction to the more difficult drug therapies for HIV at the time. Her viral load at the time, was not so bad that ART was deemed a must. She went on these drugs to be like so many others, and definitely to show the community that Black people and women can also be Undetectable, not just the white Gay community that was more widely seen at the time as finding that benefit. These drugs were very difficult for many, and there was no clarity on which ones would be better or worse for African-Americans, given the lack of data.

Today, we know that HIV accelerates Hep-C inflammation. So, getting both under control becomes of major importance, if you can do so before it is too late. Today, the best choice for this means doing a course of treatment that is about $84K, and at $1000 a pill, THIS high price is the real crisis here.

The reason we save Belynda in 2001-2002, is the same reason that we save the person who could have benefited from $10 of vaccination. In her words, "Nobody is a throw away person." You just do it.

Contrary to the writers knowledge, during Belynda's crisis, activists WERE fighting locally to reduce the cost for effective treatments for those who have the least Globally, and so the answer is that if health care systems anywhere can help people get access to what then benefits all of us, and do it less expensively, then we MUST do that.

If it had not been for the very work Belynda Dunn did at the forefront of the HIV/Hep-C co-infection crisis, giving her life to it literally, so many today would not have known about this emerging issue and been able to change the laws that she could not benefit from. Saving her, would probably have helped save even more, because there remains great work to do, that no one would have done, quite like her.

Belynda's transplant was not $500K. $275K was raised to cover it, and ancillary costs that NHP was still NOT going to cover and so lets get that fact correct before we over-inflate what her cost was to have been. I'm quite sure, if she had been any other woman of color from Dorchester, MA, there would have been very little interest or reason to review why the NHP decision was both racist and inappropriate as sound policy.

Today, the diagnostics and treatments to help a woman like Belynda are so much more favorable, as are the laws that she died for.

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