This post is a part of our Bioethics in the News series
By Marleen Eijkholt, JD, PhD
I love puzzle rooms and detective novels. When medicine looks like a puzzle room, I become fascinated as a non-MD aspiring detective. When that medical mystery reveals an ethical problem, I really get in gear, as a clinical (neuro) ethicist.
Reading about the “Mystery of sonic weapon attacks at US embassy in Cuba” made me consider how physicians engage in a puzzle, and how piecing the story together leads to a hypothesis, as if in a puzzle room. Patients with strange and mysterious medical symptoms, suspicious circumstances, and the culprit? Uncertain – inexplicable narratives, patterns, and complaints that do not head in a clear prognostic direction. A story that continues to unravel. Doctors are detectives, and medicine can be a journey through a puzzle room to discover clues about the cause of ailments. Within the story, technology is the enemy but perhaps also a friend; providers embrace technology as it seems to promise a definitive answer.
The ethical problem: We do not make patients privy to the fact that medicine is something of a puzzle room, and that medicine’s technological tools carry substantial uncertainty. Instead, medical technology is presented as offering the path to a concrete solution. Uncertainty is rarely addressed by providers, or presented to patients who pay for expensive technologies, and equally who might suffer under their use. The medical world operates in a political and cultural system, which affects how providers want to see symptoms and technology. Patients get carried along with the tide. The embassy story made me think about the role of a clinical ethicist. Who challenges the patient, who challenges the doctor, who challenges the technology? Should clinical ethicists be detectives too?
What is/was going on in the Cuba case? Early news stories reported that a sonic weapon might have harmed American diplomats. Diplomats claimed hearing loss, speech problems, vision issues and nausea after perceiving high-pitched noises and thumps. Canadian diplomats (and their children!) might have been harmed too. Reports indicated uncertainty about the culprit: “None of this has a reasonable explanation.” Experts submitted that no detrimental sonic weapon with this power had yet been developed. However, plagued by symptoms, diplomats were called back for safety reasons; reasonably, they were not expected to endure permanent threats to their health, lives and livelihood.
Since the diplomats had not experienced blunt trauma, their condition was baffling. Research, as JAMA published, suggested that many of the 21 study participants showed various “objective” signs that could indicate neurologic injury, i.e., symptoms often found in individuals post-concussion. About the culprit, the authors stated: “The unique circumstances of these patients and the consistency of the clinical manifestations raised concern for a novel mechanism of a possible acquired brain injury from a directional exposure of undetermined etiology.” Per the study, MRI findings indicated a shift change in white matter, possibly suggesting a neurological foundation to the problem.
Critics of the study were less sure (see references 3, 5, 6, and 8 below). They questioned the MRI tool and laid out different approaches to the puzzle, in full public view. Critical analysists, including a Cuban author, labeled the symptoms as potentially psychosomatic, the result of a conversion disorder. Suggesting a mass-psychogenic illness, the authors submitted that the hype around Cuba generated a “bias,” creating anxiety and hypersensitivity. They contested the finding’s objectivity as based on self-report or subjective interpretations of the researchers. Hence objective conclusions were elusive. Critics offered that: “Medical diagnosis at any given time depends to some extent on the current state of scientific knowledge, historical and cultural context, and the framework through which a disease is conceptualized.” However, this context was explicitly ignored by another expert who favored a physical approach. In a Neurology Today article by Dan Hurley, Dr. Terry Fife stated: “Just because an MRI is normal doesn’t mean everything else is normal. Many conditions in the past that we thought were subjective turned out to be quite real.”
Image description: a black silhouette of a figure walking, the figure’s head is a puzzle piece. The figure is against an orange background. Image source: Thomas Hawk/Flickr Creative Commons.
Intrigue around the sonic attacks made me consider how mechanistic conclusions are rarely called into question. In this case, the critical perspective came from fellow physicians, which is reassuring; the system does not often question mechanistic truths. I wonder what mechanisms exist in the real life clinic? I hear about cases in which the most powerful physician might reference MRI results, and oppose the withdrawal of life support. Contrary to the whole team of other providers, who describe the clinical picture as awful and exacerbating the patient’s suffering, as well the family, who indicate that the patient would not want continued life support, the physician objects to withdrawal, stating that the MRI tool does not confirm the clinical picture; this physician wishes to continue full steam ahead. Without questioning his tool (i.e., the MRI), or the technological questions of his colleagues, the patient is unreasonably made to suffer.
Tools to facilitate any type of “certainty,” like MRIs, are popular reference points used to instill trust in our patients and our families. Just as the detective’s magnifying glass stands for scrutiny and expertise, the stethoscope stands for the physician’s trustworthiness. In foggy medical settings, heart monitors and MRI machines are powerful symbols to generate certainty and clarity. The health care setting presents them as supersonic tools. In cases where the results are questioned, the setting proposes that the patient must be “wrong” and not the technology. As illustrated in the Cuban diplomats’ case, the alternative explanation for their symptoms goes straight to mass psychogenic illness. Instead of having a somatic origin, because we could not view something, the symptoms must be caused by a mental state.
What is the role of a clinical ethicist within this culture? The story made me consider how much we need to walk into the medical puzzle room. Especially where medical tools are obstacles because of their presumed “definitive” clarity. Where physicians ignore questionable methodologies, should ethicists then be the detective? Pull out their magnifying glass, and use their tools of critical questions? Who should ask what is real and what is not? Whose role is it to challenge the patient, the doctor, the technology?
Marleen Eijkholt, JD, PhD, is an Assistant Professor in the Center for Ethics and Humanities in the Life Sciences and the Department of Obstetrics, Gynecology and Reproductive Biology in the Michigan State University College of Human Medicine. Dr. Eijkholt is also a Clinical Ethics Consultant at Spectrum Health System.
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