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.”
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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References
- Associated Press in Washington. Mystery of sonic weapon attacks at US embassy in Cuba deepens. The Guardian. https://www.theguardian.com/world/2017/sep/14/mystery-of-sonic-weapon-attacks-at-us-embassy-in-cuba-deepens. Published September 14, 2017. Accessed May 16, 2018.
- Bartholomew R. Cuban Science Panel Blames ‘Psychogenic Disorder’. Skeptical Inquirer. March-April 2018;42.2:8+. Academic OneFile, http://link.galegroup.com/apps/doc/A530817570/AONE?u=msu_main&sid=AONE&xid=420c9ee8. Accessed May 16, 2018.
- Bartholomew RE, Zaldívar Pérez DF. Chasing ghosts in Cuba: Is mass psychogenic illness masquerading as an acoustical attack? International Journal of Social Psychiatry. April 2, 2018. https://doi.org/10.1177/0020764018766185.
- Cullen C. Canada sending home families of diplomats in Cuba after cases of ‘new type’ of brain injury. CBC News. http://www.cbc.ca/news/politics/cuba-diplomats-embassy-1.4621992. Published April 16, 2018. Accessed May 16, 2018.
- Hurley D. The Mystery Behind Neurological Symptoms Among US Diplomats in Cuba: Lots of Questions, Few Answers. Neurology Today. March 2018;18(6):24-26. doi:10.1097/01.NT.0000532085.86007.9b. https://journals.lww.com/neurotodayonline/Fulltext/2018/03220/The_Mystery_Behind_Neurological_Symptoms_Among_US.1.aspx.
- Muth CC, Lewis SL. Neurological Symptoms Among US Diplomats in Cuba. JAMA. 2018;319(11):1098–1100. doi:10.1001/jama.2018.1780. https://jamanetwork.com/journals/jama/fullarticle/2673164.
- Neuman S. Cuban Diplomats Expelled After U.S. Embassy Staff ‘Incidents’ In Havana. NPR. https://www.npr.org/sections/thetwo-way/2017/08/09/542513962/cuban-diplomats-expelled-after-u-s-embassy-staff-incidents-in-havana. Published August 9, 2017. Accessed May 16, 2018.
- Sala SD, Cubelli R. Alleged “sonic attack” supported by poor neuropsychology. Cortex. Available online April 5, 2018. https://doi.org/10.1016/j.cortex.2018.03.006.
- Stone R. Stressful conditions, not ‘sonic weapon,’ sickened U.S diplomats, Cuba panel asserts. Science. http://www.sciencemag.org/news/2017/12/stressful-conditions-not-sonic-weapon-sickened-us-diplomats-cuba-panel-asserts. Published December 5, 2017. Accessed May 16, 2018.
- Swanson RL, Hampton S, Green-McKenzie J, et al. Neurological Manifestations Among US Government Personnel Reporting Directional Audible and Sensory Phenomena in Havana, Cuba. JAMA. 2018;319(11):1125–1133. doi:10.1001/jama.2018.1742. https://jamanetwork.com/journals/jama/article-abstract/2673168.
MSU Bioethics 
Can’t agree. The reason that she is the “most powerful physician” is likely because she’s the best medical mind on the team… or to use your analogy, the best puzzle solver. She’s probably over the age of 40 (unlike her detractors) and has learned through experience when and when not to rely on technology. I also find it disingenuous that we disregard families when they want to keep the patient on life support but use them as allies when they want them removed.
Dear Thomas, thank you for your reply. Your response raises many issues. I agree that the relationship between providers and families can be somewhat inconsistent, i.e. sometimes the family is seen as a friend, and other times the family is a foe. As a clinical ethicists I see situations on either end: i.e. where the family wants to hang on and the provider disagrees, or even where the family wants to discontinue and the provider wants to hang on. Many of these cases entail communication problems, in my opinion, and ‘distrust’ is often present too, rather than ‘disingenuity’. These cases often involve systemic issues too:i.e. where the family or the provider is situated.
I’m not sure that I agree with you on the likelihood of the ‘best medical mind’ knowing when to trust technology, and age coming in. I believe that the placement of the provider within the system has more to do with it. For example, surgeons are some of the most powerful providers, regardless of their age. They hold the key to many settings: when they do/do not offer a service, the rest of the providers may be stuck. At the same time, the outcome measures for surgeons/ surgery programs may dictate many of their decisions. Results may be impacted by a particular mindset , created by the system in which they operate.