By Lauren A. Taylor, Coordinator for Health and Religion in the Global Context, Harvard Divinity School and co-author of The American Health Care Paradox: Why Spending More Is Getting Us Less(PublicAffairs, 2013).
Following his keynote address, on which Melissa has already blogged, Paul Applebaum responded to an extended set of audience questions over lunch at the PRIM&R Advancing Ethical Research conference on Friday.
Among the questions asked of him, one stood in stark relief to the general tenor of the event. While many participants had taken hold of the microphone to commend Applebaum on his remarkable career pursuing this idea of ‘therapeutic misconception’ among clinical trial enrollees, a female participant took a different path. She asked if he had ever considered the possibility that people needed to misconceive the trial, on some psychological level, for their own survival. In so doing, she drew into question an entire previous discussion that had focused on ways in which the research community could work more effectively to inform clinical trial enrollees of the risks posed to their health and slim chances at recovery.
Dr. Applebaum took the opportunity to discuss the difference between healthy and unhealthy hope. Healthy hope, as we might expect, was a construct he defended vigorously. He referred to it as a belief that, even in the face of small odds, one’s health may improve. Unhealthy hope, however, is an unfazed belief in any treatment provided by clinicians to provide benefit. The distinguishing feature, for Dr. Applebaum, was how informed the patient was about the intentions of his clinical team in enrolling him in the study. He suggested the book, The Anatomy of Hope, by Harvard professor Jerome Groopman, for those more deeply interested in such a disctinction.
Following Dr. Applebaum’s response, the participant who had asked the question pressed on. She noted that in dire circumstances, hope may in fact be all that a person has left, and no matter how unhealthy we (as outsiders) judge it to be, perhaps it has value. She cautioned the audience about the dangers in rushing to judgment, even in the face of compelling statistics the likes of which Dr. Applebaum had already presented.
Buried in this back-and-forth is a fundamental question about the nature of patient (and research subject) autonomy. For Dr. Applebaum, respecting patient autonomy appeared to be a motivating factor in his desire to inform and engage individuals in a more fulsome manner regarding the risks and benefits of research. Educating them in this way will actually enhance a patient’s ability to act in an autonomous way. The questioner, however, raised a different perspective on autonomy. Her view suggested that forcing patients to confront grim statistics and more deeply grapple with the low risk of recovery was, in effect, an encroachment on patient autonomy. The question therefore becomes: how much does a patient need to know in order to be considered autonomous? Can they know nothing and still be considered capable of acting in their own best interest? Or must they know everything?
Like any good exchange, I imagine that whatever most closely resembles “truth” lies between these two extremes. And ultimately, I suspect both the questioner and Dr. Applebaum would have found common ground if given a few more minutes together. As it was, he thanked the participant politely before the lunch concluded, and she returned to her table with the satisfaction of having raised a caution flag in the room’s rush to judgment. Still, this issue of the importance of hope, and its relationship to information or education looms large. While therapeutic misconception certainly needs addressing, we would be foolish to believe that this can be done without some cost.
