Is Your Doctor Experimenting On You?
My friend’s father is in the hospital, and it’s been rough. His cancer treatment did not go as expected. “He’s suffering so much!” my friend sighed. “And the doctors, they’re just experimenting on him. It’s horrible.” When I heard this, I was confused. Was her father in some sort of experimental treatment? “No. But the doctors told us that once he had this treatment, he’d have another five good years, at least. The chemo was awful, but it was supposed to be worth it. It turns out he’s still sick with cancer, and I feel terrible that we put him through that torture. The doctors said they didn’t know why it didn’t work. It’s like they’re just experimenting.”
When I heard my friend’s story, I had a powerful feeling of déjà vu. Her narrative sounded just like letters I had found from the 1960s in Harvard Medical School’s archives. They were letters that frustrated and disillusioned patients had sent to Dr. Henry Beecher, after he published his explosive 1966 whistleblowing exposé of ubiquitous research abuses in American hospitals, clinics, and homes for the elderly and disabled. Beecher, a prominent anesthesiologist at Harvard Medical School, was trying to reign in the cowboys of American medical research. He wanted to end the common practice of secretly conducting experiments that were irrelevant to patients’ treatment and potentially harmful. Many people, though, extended his critique much further than he had intended. Ordinary Americans felt “experimented on” when their doctors were misleading, callous, and dismissive, whether or not their treatments reflected mainstream practice. They wrote to Beecher looking for sympathy and perhaps an ally in seeking redress.
When Beecher published his exposé, a detailed description of 18 blatantly unethical experiments unselfconsciously reported in prominent medical journals, the Nazi abuses of World War II were still fresh in people’s minds. Nazi physicians had conducted brutal experiments on concentration camp inmates, and the world was horrified to learn of these atrocities during the Nuremberg Trials of the late 1940s. It was no small thing to accuse physicians of abusive experimentation.
And yet, research physicians could not seem to see why what they were doing was a problem. Several prominent researchers gave hasty press conferences repudiating Beecher’s assertions and issuing a blanket defense of medical research. Beecher responded with an angry letter to his Harvard Medical School colleague, Dr. Sidney Farber. “I really wondered how you could have made the statement you did in view of the well known study at the Children’s Medical Center which involved a score of individuals whose thymus glands were removed for experimental purposes. There is no use saying that the removal of the thymus gland is part of heart surgery.”1 When Dr. Arnold Relman, distinguished editor of the Journal of Clinical Investigation, asked Beecher to name any specific examples that had come from his journal, Beecher chided, “If you cannot spot very easily unethical or questionably ethical examples, you are not the Bud Relman I knew a number of years ago.”2
Even Dr. Henrik Bendixen, a friend and colleague who Beecher had asked to comment on a draft of the exposé, seemed frustratingly obdurate. Bendixen thought that most of Beecher’s examples of unethical research were really not that bad. In one, women undergoing a simple procedure were simultaneously given a drug that induced cardiac irregularities, purely for the sake of research. To Beecher, this was clearly “dangerous.” Bendixon insisted, “I know this paper well and would be pleased, had my name been among the authors.” Beecher scrawled angry margin notes all around Bendixon’s comment, his frustration glaringly apparent in those penciled scribbles on the carbon copies. “Ends justifies means, you say! This is not for MGH [Massachusetts General Hospital] during my tenure. May we use your wife and daughter?” Beecher’s published exposé was dry and clinical, but his outrage was front and center in his private notes. “You have no right to risk the lives of anyone. This study did just this; certainly [without] permission or knowledge on the part of the subject.” And finally, “There are reasonable laws against mayhem—which this is.”3 Many of Beecher’s colleagues couldn’t seem to see past the insular world of Cold War biomedicine, in which elite researchers took it upon themselves to decide which patients would unwittingly have their health put at risk for the sake of medical progress.
Practicing physicians, in contrast, seemed to have no trouble making the distinction between experimentation and treatment. Many wrote letters to Beecher expressing their surprise and dismay at the behavior of medical researchers. Dr John McLaughlin wrote, “Dear Dr. Beecher: Thanks for your staunch defense of medical ethics. Most of us in practice are at a loss as to what is going on as regards experimentation; but we feel things have gone too far, and, are not being guided by proper principles. I know you will get plenty of criticism from others, so I just want to commend you for your honesty and courage.”4 Practicing physicians certainly did not want their patients’ trust undermined by revelations of dangerous experimentation at teaching hospitals and research institutions.
Yet, practicing physicians also had blind spots when it came to the ethical treatment of their patients. Many could not see the importance of clear communication, empathy, and kindness. At least some of their patients held them responsible for the ways that these failures compromised their care. Beecher received a number of letters from distraught patients who complained that they or their family members had been the victims of experimentation. What they meant by “experimentation,” though, was not really the situations Beecher was addressing. They were distressed because their doctors had hospitalized them without clear explanation, refused to explain treatment plans, exposed them in humiliating ways in front of medical colleagues and students, and left them with confusing and distressing side-effects of attempted treatments. To patients, this constituted “experimentation,” and called for redress.
Beecher wrote back to each of these correspondents, politely but firmly explaining that what they were calling “experimentation” was actually treatment. It was the nature of medical practice that physicians had to try out treatments to see what would work on an individual patient, he explained, and medical treatment was never a sure bet. He only meant to end experimentation that was not for the patient’s potential benefit.
In the end, Beecher and like-minded colleagues instigated a genuine movement for reform of medical research, which eventually extended to medical practice. We now take for granted that institutional review boards are required to approve medical research, and that physicians are required to get informed consent from their patients even for routine, therapeutic treatments.
We have come a long way. And yet, hospital routines can still be confusing and humiliating. Doctors too often fail to take the time to fully discuss a patient’s prognosis and treatment plan. At a moment of illness, when a person is most vulnerable and in need of empathy and kindness, she is too often thrown into a cold, impersonal, and baffling medical system that leaves her feeling lost and mistreated. It can easily leave a person feeling that she is simply an object — a target of experimentation, rather than care. My friend’s complaint that her father’s doctors were experimenting on him resonates so clearly with the letters to Beecher from distraught patients, filed in his personal archive a half century ago. As this persistent strain of criticism demonstrates, modern medical ethics is still a work in progress.
Further Reading
Lara Freidenfelds, “Recruiting Allies for Reform: Henry Knowles Beecher’s ‘Ethics and Clinical Research,’” in Edward Lowenstein and Bucknam McPeek, eds., Contributions of Henry K. Beecher: Revisiting a Giant, International Anesthesiology Clinics 45.4 (September 2007).
David Rothman, Strangers at the Bedside: A History of How Law and Bioethics Transformed Medical Decision-Making (Basic Books, 1991).
Notes
- Quoted in Lara Freidenfelds, “Recruiting Allies for Reform: Henry Knowles Beecher’s ‘Ethics and Clinical Research,’” in Edward Lowenstein and Bucknam McPeek, eds., Contributions of Henry K. Beecher: Revisiting a Giant, International Anesthesiology Clinics 45.4 (September 2007), 93-4. Return to text.
- Quoted in Freidenfelds, 96. Return to text.
- Quoted in Freidenfelds, 94-5. Return to text.
- Quoted in Freidenfelds, 96. Return to text.
Lara Freidenfelds is a historian of health, reproduction, and parenting in America. She is the author of The Myth of the Perfect Pregnancy: a History of Miscarriage in America and The Modern Period: Menstruation in Twentieth-Century America. Sign up for her newsletter and find links to her op-eds and blog essays at www.larafreidenfelds.com.
1 thought on “Is Your Doctor Experimenting On You?”
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I really appreciate this thoughtful reflection, Lara. It resonates with me, as I think it does with a great many people who have had the confusing and frightening experience of what feels like “double-speak” conversations with doctors.