Tuesday, August 11, 2009
Eunice Kennedy Shriver, Qalys, and Serious Medicine
Eunice Kennedy Shriver, Rest In Peace. As the sister of a president and two senators, wife of a vice-presidential candidate, and mother-in-law to the governor of California, she was a close witness to much of this country’s history over her 88 years. And yet she is best known for her central role in the founding of the Special Olympics.
And the Special Olympics, which provide games and contests for the developmentally disadvantaged, are a reminder that the American people (most of them, anyway) embrace a culture of life. That is, ordinary folks reject the sort of utilitarian cost-benefit calculus--factoring in “quality of life,” among other variables--that guides so many “experts.”
It’s that conflict, between the masses who think one way and the elite who think another way, which is at the heart of the current debate over “health insurance policy.” The masses have an impulse toward life, and more life, while the elites choose to emphasize quality of life. We can stipulate that it’s an honest debate, between differing world views, but, of course, since the masses outnumber the elite, the masses usually get their way, if and when they mobilize themselves into a political majority. Such a mobilization is what seems to be happening across the country, and that’s big trouble for Obamacare.
The celebration of life can be regarded as irrational. But human beings are not Mr. Spock; we are what we are. We have our rational moments, our romantic moments, our artistic moments. And art is irrational, in the sense that it appeals to the emotion; art goes to the heart, not the head. And so when I thought of Shriver’s life, and the work she did, the 1978 Bruce Springsteen song, “Badlands,” came to mind:
For the ones who had a notion, a notion deep inside
That it ain’t no sin to be glad you're alive
And that’s the bottom line, irrespective of politics--Springsteen's or anyone else's: People want to live, they don’t want to die.
In addition, many people take seriously Jesus’ injunction in the Book of Matthew, “Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me.” Not everyone likes Christians, but most Christians love their faith--and they vote. Moreover, many of them have passion and energy, of the kind we have seen in Congressional town meetings this summer.
Yet there is a significant counter-pressure on life and health issues. That counter-pressure emerged out of the eugenics movement, Social Darwinism, as well as as from other sources. Invoking the idea of “quality of life,” its tenets include assisted suicide and euthanasia. And then, reflecting the same general state of mind, some go further, delving into negative population growth, deep ecology, and even a vision of a world without us--that is, without human beings at all. These worldviews may seem to be on the fringe of society and civilization as a whole, but they cluster large in the commanding heights of the political culture, as well as in the citadels of “health care policy”--where they are bolstered, of course, by budget cutters.
We might call them all “Qalys,” which is the acronym for Quality Adjusted Life Year, which emerged from Britain’s National Health Service. One leading Qaly is Ezekiel Emanuel, chairman of the Department of Bioethics at the Clinical Center of the National Institutes of Health, now on leave to serve as special health care policy adviser to the Obama White House, where his brother, Rahm Emanuel, is the president’s powerful chief of staff.
In 1994, Ezekiel Emanuel wrote an article entitled “The History of Euthanasia Debates in the United States and Britain,” in which he offered the following opinion:
Human life is sacred, but only to the extent that it contributes to the joy and happiness of the one possessing it, and to those about him, and it ought to be the privilege of every human being to cross the River Styx in the boat of his own choosing, when further human agony cannot be justified by the hope of future health and happiness. [emphasis added]
Note the key words “and to those about him.” Meaning that others, other than the patient, get to make such end-of-life decisions. And who are the others? The family? And if so, which members of the family? Or is it the doctors? The hospital? The government? One can thus clearly see the full dimensions of a big fight.
Yet we needn’t impugn anyone’s motives, as we make the point again that not everyone will agree with any one answer. (Which, of course, is the problem with any sort of one-size-fits-all system, a.k.a., any government-run program. The sheer diversity of opinion on such matters guarantees that any single uniform solution will be unpopular among those who don’t get their wish.)
In the meantime, a substantial backlash has built up against the Qalys, summed up in the mission statement of the blog “Not Dead Yet”:
Since 1983, many people with disabilities have opposed the assisted suicide and euthanasia movement. Though often described as compassionate, legalized medical killing is really about a deadly double standard for people with severe disabilities, including both conditions that are labeled terminal and those that are not.
Not Dead Yet was founded on April 27, 1996, shortly after Jack Kevorkian was acquitted in the assisted suicides of two women with non-terminal disabilities. In a 1997 Supreme Court rally, the outcry of 500 people with disabilities chanting "Not Dead Yet" was heard around the world. Since then, eleven other national disability rights groups have joined NDY in opposing legalized assisted suicide; chapters have taken action in over 30 states, and we helped put Jack Kevorkian behind bars in 1999. In the 2003-2005 fight to save Terri Schiavo, twenty-five national disability groups joined Not Dead Yet in opposing her guardian's right to starve and dehydrate her to death.
For her part, Shriver’s leadership in Special Olympics was not political. Shriver was moved by the plight of her sister, Rosemary, who was lobotomized while young and then institutionalized for the rest of her life.
We might further surmise that as a Roman Catholic, Shriver was not happy with the general direction of the Democratic Party, in terms of abortion and culture-of-life issues. Yet she kept quiet, choosing instead to focus on her work--which, of course, can be seen as a refutation of the “culture of death” that many Catholics criticize. Today, Special Olympics helps 3.1 million people with disabilities participate in events in 170 countries.
As The Washington Post put it this morning, Shriver will be remembered for:
[P]laying a major role in changing the perception of mental retardation. When she began her work in the field half a century ago, it was common for mentally disabled people to be placed in institutions that did little more than warehouse them. Through her programs and hands-on efforts, she demonstrated that with appropriate help, most developmentally disabled people can lead productive and useful lives.
That’s the culture of life in action. And that’s how Eunice Kennedy Shriver lived her life. It’s admirable, it’s popular, and it’s a vote-getter--It ain’t no sin to be glad your alive.
And thus the connection to Serious Medicine, and to the Serious Medicine Strategy. If people want life, and if they want to live, they will want Serious Medicine, because Serious Medicine will save their lives. So when people learn, for example, about the danger of Swine Flu, or the threat of new kinds of HIV--or anything else that might kill them--they worry, and they want something done. In a life-and-death situation, most people don’t want to think about QALY, or any other sort of utilitarian calculus. They want to protect life. Period.
And if all that takes money, well, that’s the reason we need a Serious Medicine Strategy.
Posted by James P. Pinkerton at 10:57 AM