Brain Matters 3: Values at the crossroads of Neurology, Psychiatry, and Psychology October 24-25, 2012;Cleveland, Ohio Overview: This conference addresses ethical dilemmas in the treatment and research for conditions with neurological symptomatology but that are without identifiable biological correlates/causes. The conditions of interest are often framed as medically unexplained symptoms (MUS), non-specific etiologies (NOS), or purely psychological. These diagnoses include, but are not limited to, chronic pain disorders, psychogenic movement disorders, conversion disorders, post traumatic stress disorder, and fibromyalgia. The complexities of suffering and disability experienced by individuals with these conditions are significant;including exposure to dangerous and futile treatments. Among clinicians, disagreement continues over which aspects of these conditions are """"""""all in one's head,"""""""" either literally or figuratively. Hidden value assumptions about causation permeate research studies and clinical decisions, and effect underlying treatment and care of patients. These assumptions have significant influence on the obligations, roles, and entitlements for patients and health care providers. Patients who suffer from these conditions are """"""""orphaned"""""""" by specialties and largely ignored in bioethics discussions. The plenary speakers of this conference will address ethical challenges from a variety of academic disciplines and medical subspecialties. Presentations will be given by patients, physicians, neuroscientists, and ethicists. Research abstracts will be solicited both for oral presentations as well as poster presentations. Special Non-Epileptic Seizure Track: Psychogenic non-epileptic seizures (PNES) constitute a major unaddressed challenge to our healthcare system. PNES was identified in the 2007 NINDS Epilepsy Benchmarks as an important area in need of significant further study and as of the April 2011 progress update, only modest gains have been made in this area. On average, these patients carry an epilepsy misdiagnosis for seven years prior to being identified as PNES and are exposed to high levels of anti-epileptic medications during this period. """"""""Workups and treatments for what is mistakenly thought to be epilepsy are estimated to incur $100 to $900 million per year in medical services"""""""" (LaFrance and Benbadis. 2006). Even with a proper diagnosis, PNES leaves significant disability and burden on patients and their families, as there is no definitive treatment (Brown et al., 2011). Given that Brain Matters 3 will overlap with the 21st International Epilepsy Symposium and will occur in the same building, a dedicated PNES ethics sub-theme will occur on Day 1 of Brain Matters 3 to take advantage of the crossover audience. This will include working group sessions on both Adult and Pediatric ethics issues in PNES. These working groups will analyze the current needs in ethics of PNES and will outline the theoretical and empirical research necessary to provide guidance for the best ethical practices around PNES. Ethical challenges facing clinicians and researchers include communication of disclosure, documentation and purposeful mislabeling, return to work requests, driving restrictions, placebo use in diagnosis and treatment, and stigma in medical education. The hope is to create neuroethics collaborations on conditions with neurological symptomatology, but that have medically unexplained symptoms or are believed to have psychogenic components. To this end, conference support is being sought from NIH that would allow a rich dissemination of results through publication and video access, remove barriers to participation by emerging researchers, and integrate working groups into this conference that will occur in 2012.
The current multidisciplinary conference examines the ethical challenges inherent in researching and treating patients with conditions that exhibit neurological symptomatology, but with unclear biological correlates/causes. In particular there is a focus on Psychogenic Non-epileptic Seizures, but a generalization to broader conditions such as post-traumatic stress disorder, pain syndromes, and psychogenic movement disorders.
| Cole, Cristie M; Falcone, Tatiana; Caplan, Rochelle et al. (2014) Ethical dilemmas in pediatric and adolescent psychogenic nonepileptic seizures. Epilepsy Behav 37:145-50 |
| Hustvedt, Siri (2013) Philosophy matters in brain matters. Seizure 22:169-73 |
