Complex Cases Help Remind Us Why We Do What We Do

By Imad Najm, MD

What defines us? If you’re an accomplished investigator, your peers around the country may know you primarily for research studies you’ve contributed to. If you’re a great educator, the trainees you’ve mentored may think of you foremost as a teacher. While these are very important parts of our professional identity, they don’t really reflect what’s probably our most fundamental role — expert caregiver. Only our patients and their families, who trust us so much, are apt to see us exclusively from that most-important vantage point.

This idea helped inform the planning behind a publication we in Cleveland Clinic’s Neurological Institute have been developing to share our work with our peers across the country. Instead of specifically discussing innovations we’ve helped develop or studies we’ve been conducting, we asked, Why not focus on our true measure and common goal: caring for patients with the most complex neurological disorders?

The result is a recent collection of case studies focused on precisely that: How we manage some of the most challenging cases of brain and spine disease in the world by harnessing a culture of innovation and an integrated, multidisciplinary approach to care. The case studies represent diverse corners of our Neurological Institute:

• Combined Surgical-Endovascular Treatment of an Intracranial Aneurysm in a Patient with ACTA2 Mutation
• Spinal Fusion with Pedicle Screw Instrumentation, Iliac Fixation and Multilevel Osteotomies for Adult Scoliosis
• Tumor Ablation with Chemo-Radiotherapy Consolidation Yields Rare Durable Glioblastoma Remission
• Treating the Patient, Not the Disease: A Physician’s Long Journey to DBS for His Refractory Early-Onset Parkinson Disease
• Multimodality Evaluation Enables Epilepsy Control in a Patient with Periventricular Nodular Heterotopias

Despite their diversity, these case studies collectively illustrate what we believe is distinctive about the way the Neurological Institute manages patients with highly challenging neurological conditions. Below are a few essential aspects of our approach.

A culture of innovation. As one of the largest-volume centers in the world for epilepsy surgery and one of the nation’s busiest centers for everything from deep brain stimulation to brain tumor care, our physicians and surgeons have amassed deep experience in using — and often pioneering — the advanced technologies required to manage complex brain and spine diseases. Examples from the case studies above range from an early (2011) use of laser interstitial thermal therapy to achieve a rare glioblastoma remission that’s lasted for 6.5 years and counting to the combination of stereoelectroencephalography and cortico-cortical evoked potentials to localize the epileptogenic focus in a patient with multidrug-resistant epilepsy.

A well-integrated, multidisciplinary approach to care. In a time when multidisciplinary has become a buzzword, Cleveland Clinic’s institute-based and patient-centered structure has truly brought the concept to bear in practice. We have disrupted the typical organization of neurological care delivery by bringing together medical and surgical experts into a single organizational entity under a single leadership to focus on the problems of patients, whether they have Parkinson disease, spine problems or cerebrovascular disorders. The result is a model of care that treats multidisciplinary collaboration as a given, not an afterthought. Examples from the case studies above include the hybrid surgical-endovascular approach seamlessly deployed for the patient with the intracranial aneurysm as well as the multidisciplinary patient management conferences that guided care for the patients with spinal deformity, glioblastoma, Parkinson disease and epilepsy.

Seeing patients as we’d view a family member. Because brain and spine diseases so often have insidious effects on cognition, mood and daily function, our patients are particularly in need of personalized and empathetic caregiving. Nowhere is this better exemplified than in the case study above recounting how our movement disorders team patiently managed and counseled a young patient with early-onset Parkinson disease over the course of six years, 20-plus office visits, multiple drug trials and extended-family visits until he was emotionally and psychologically ready to try deep brain stimulation, which has since served him very well.

Commitment to long-term follow-up. Each of the above case studies demonstrates expertise and excellence in acute care. But many of our most complex patients come from outside Northeast Ohio. Thanks to distance health technology, such as two-way video-enabled virtual visits using Cleveland Clinic’s Express Care® Online app, we increasingly help manage these patients remotely in their home communities after they leave Cleveland following their acute care. We welcome the opportunity to work with patients’ referring providers to supplement their local care to whatever extent desired.

Bottom line: Take stock of yourself as a caregiver

If you’re a provider at an academic medical center or health system, it never hurts to take stock, from time to time, of specific examples of precisely what you’re doing as a caregiver to patients, as opposed to whatever other roles and responsibilities demand your time.

For us in the Neurological Institute, the exercise of assembling these case studies has helped remind us how often our role as expert caregivers can and should overlap with our roles as researchers, innovators or clinical educators. The best research and education is always care-driven, and the best care is delivered when we’re mindful of how our most important stakeholders — our patients — will see us.

Dr. Najm is Director of Cleveland Clinic’s Epilepsy Center and Vice Chairman for Strategy and Development for Cleveland Clinic’s Neurological Institute.