Monday, June 27, 2016

Fear and Loathing in Bioethics (A Manifesto)

Say what you will about Hunter S. Thompson, the man didn’t shy away from a fight. He pegged
Nixon for a two–bit hustler long before Watergate and he hounded him relentlessly. Sure, Thompson was a cokehead with a bad attitude and a fondness for dangerous firearms, but when he was on his game, no writer in America could match him for moral outrage. “Nixon was so crooked that he needed servants to help him screw his pants on every morning,” Thompson wrote when Richard Nixon died. “If the right people had been in charge of Nixon’s funeral, his casket would have been launched into one of those open–sewage canals that empty into the ocean just south of Los Angeles.”

You would not want Hunter Thompson on your hospital ethics committee. You would never put him in charge of your Research Ethics Consultation Service or let him anywhere close to an Institutional Review Board. But if you had been bullied or victimized in a hospital, you would probably want someone like Thompson on your side. Not because Thompson was a reputable investigative reporter (he made a lot of stuff up) or because he would communicate your point of view (Thompson himself was the center of virtually every story he wrote), or even because he was capable of writing some of the best sentences ever produced by an American journalist. You’d want him on your side because he was a professional outsider who despised authority and stood up to bullies. And American medicine is as authoritarian an institution as you will find in this country outside of a correctional facility.

Over the past twenty–five years, American bioethics has become an insider’s game. Not that it was ever completely different, even at the very beginning. Henry Beecher—professor at Harvard Medical School, writing in the New England Journal of Medicine—sat about as close to the inner sanctum of academic medicine as it is possible to get. But most of the other figures in early American bioethics stood well outside the medical system. Of course, those people usually worked in divinity schools, not for Rolling Stone, and they had no use for explosive devices or hallucinogenic drugs. But my point stands. Today, questions in bioethics are largely asked, debated and answered by people working inside a morally dubious healthcare system. As a result, these insiders worry that their answers might cost them their jobs.

It is no surprise that medical insiders tell most of the stories collected here. Most of them have a particular professional role in a medical institution—as bioethicists, doctors, medical students, or IRB directors—and they chafe against the limits of that role. For reasons of conscience, they push back against the rules of their institutions, the pressures of conformity, or the moral boundaries of their religion. But their role carries requirements that limit what it is proper for them to do. They can speak out in a meeting. They can write a strongly worded letter. They can even resign, if it comes to that. But they can’t go to the press, or write a muckraking magazine article, or threaten to mace the Chief of Surgery with a can of Chemical Billy.

And why should they be expected to? Bioethicists are a well–intentioned bunch, but they’re doctors and lawyers and professors. They are respectable people who are expected to behave modestly. Even when bioethicists are outraged, they can’t help sounding like Presbyterian ministers delivering the annual stewardship sermon. Thompson, of course, made moralizing seem twisted and deranged. If I were to give a talk at Duke University, it would never occur to me, as it once did to Thompson, to begin by saying what a pleasure it was to visit the alma mater of Richard Nixon, to call the Duke president a worthless pigfucker, and to hurl a tumbler of Wild Turkey at the curtain as I was being escorted from the stage.

Make no mistake, though: these are tales of fear and loathing. You can smell it especially in the stories told by anonymous narrators, such as the IRB member who mistakenly believed his panel could block unethical study recruitment by (get this) voting against it, or the bioethics professor naïve enough to believe that students who never come to class and don’t do any work deserve a failing grade. Nobody fails bioethics: that’s a foundational commandment of academic medicine, along with “Thou shalt have no other Gods before me” and “Honor thy dean and division head.” Bioethics courses have roughly the same status in medical schools that gym class has in junior high schools. The toads and bullies who preside over academic medical centers didn’t get there by asking, “What would Wittgenstein do?”

Here’s the advice offered by one of these anonymous writers to anyone considering a job in medical ethics: “Do not take such jobs unless you are willing to compromise your integrity or be fired from your job.” Now there’s a blunt choice. Door Number One? Spineless self–loathing. Door Number Two? The unemployment line. Door Number Three? There is no Door Number Three. That’s just a wall. You can either hurl yourself against it, like a bug charging at a porch light, or stare hopelessly at it as you contemplate the debased condition of your soul.

I don’t mean to minimize anyone’s moral distress. Moral distress is an entirely reasonable response to the American medical system. Anyone who has not been lobotomized would feel moral distress when her conscientious efforts to keep patients safe are crushed. But bioethicists created the conditions for their own moral distress when they chose to embed themselves within the institutions of medical power, rather than pressing for change from the outside. Bioethicists work for medical schools and hospitals and pharmaceutical companies. They are employed by the American Medical Association and the National Institutes of Health. Some of them even work for presidential commissions. But they don’t work for the ACLU or Physicians for Human Rights. They do not commit acts of investigative journalism and expose medical scandals. You will not see crowds of bioethicists holding signs outside the offices of Pfizer, Lilly, Bial or SFBC International, demanding justice for exploited research subjects.

It is possible to write a history of American bioethics in which great moral battles are waged: Dax Cowart in Texas, fighting for the right to die; Peter Buxtun blowing the whistle on research abuses in Tuskegee, Alabama; the God Committee in Seattle, deciding behind closed doors which unfortunate souls will be denied dialysis. Most of the stories told here are more modest in scale. They are about disagreements, not moral battles. They are accompanied by the trappings of institutional bureaucracies: memoranda, guidance documents, the minutes of the previous meeting. Occasionally, an academic paper is presented. Some writers are cynical, others depressed. The general mood is one of unhappiness and malaise.

Of all the sentences in these stories, the one that I keep coming back to was written by an anonymous member of an Institutional Review Board, wondering why the board seemed so impotent. “What is clear to me in hindsight, is fear: Community Members fearful of overstepping boundaries; physicians fearful of the institutional, professional and monetary repercussions of a critical vote; an IRB fearful of documented discussion about the grey areas of risks of one sort weighed against benefits of a different sort.” Yes, that sentence nicely captures the feeling: fear, but not terror or panic; submission to authority, but not over a great moral crisis. Rather, it is a sense of vague dread and menace, not unlike the emotional response that might come from suspecting your apartment has been bugged by the Stasi. No need for overt threats or intimidation, no need to call in the General Counsel or change the locks on anyone’s office door. All that’s needed to keep people from stepping out of line, as Giles Scofield writes, is “peer pressure, the silent treatment, whisper campaigns.”

Of course, some institutions are exceptional. A few years ago, I was introduced to a hematologist who had trained as a resident at the Medical University of South Carolina in the mid–80s during the same period I was there as a medical student. His first words to me: “So you went to MUSC. Man, what a shithole. That place is run by fascists. How did you like it?” My answer: I liked it about as much as he did. MUSC was run like a military school for adolescent boys and its warden was a grinning dentist named Jim Edwards, a former South Carolina governor and cabinet secretary in the Reagan administration who had no previous experience in higher education. When Edwards left Washington to return to South Carolina in 1982, the editors of the Washington Post wrote that “he will be remembered here for a degree of cheery incompetence that, with the best will in the world, no successor is likely to equal.”

Edwards’ cheery incompetence was accompanied by a vacuous indifference to medical ethics. It was no surprise to me when MUSC was sued successfully by the ACLU a few years after I graduated. Testing pregnant black women for drugs in the hospital without their consent seems perfectly in line with the governing philosophy of the institution. So does having the pregnant women arrested and prosecuted if they tested positive. For that matter, it was not exactly a shocker that Edwards refused to sign off on Mary Faith Marshall’s promotion after she testified honestly about the policy in court. The only real surprise in the story of Ferguson v. City of Charleston is that there were white employees of the institution who actually objected to the hospital’s policies.

The machinery of the medical–industrial complex grinds up conscientious people because those people can see no remedies for injustice apart from the bureaucratic procedures prescribed by the machine itself. The answer to injustice is not a memorandum of understanding or a new strategic plan. It is public resistance and solidarity. The story of institutional racism at the Medical University of South Carolina ended with a Supreme Court victory not because a bioethicist cast a dissenting vote, but because the ACLU sued the bastards. Of course, a little malice never hurts the cause. As Dr. Thompson wrote in 1966, “There is not much mental distance between a feeling of having been screwed and the ethic of total retaliation.”

From: Carl Elliott, "Fear and Loathing in Bioethics," Narrative Inquiry in Bioethics, Volume 6, Number 1, Spring 2016, pp. 43-46.

1 comment:

  1. This explains a lot about why it's so hard for even the most informed patients to get a seat at the table. Sure, many can be cowed, but not all. Among those who remain, some will have a sense of moral indignation, and God knows who we might tell!


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