Caring for People With Brain Injuries
A DISCUSSION OFThe Complicated Legacy of Terry Wallis and His Brain Injury
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In “The Complicated Legacy of Terry Wallis and His Brain Injury” (Issues, Winter 2023), Joseph J. Fins employs the story of one man to underscore a severe shortcoming in the US health care system. Disorders of consciousness (DoC) are conditions of the brain when there is not brain death but there also is not consistent responsiveness to external stimuli. People who experience DoC may progress through coma, unresponsive wakefulness, and minimally conscious states before sleep/wake cycles are re-established and reliable responsiveness to external cues return.
People who experience prolonged DoC following traumatic brain injury encounter multiple faults in the existing service delivery system. Despite recent evidence that three of four persons with DoC due to traumatic brain injury will become responsive by one year after injury, many families are being asked to make decisions regarding withdrawal of life supports just 72 hours after injury. These families cannot be expected to know about prognosis; it is the responsibility of the health care system to provide unbiased and evidence-based data upon which these critical decisions can be made.
It is also incumbent upon the health care system to provide competent care tailored to the needs of persons with prolonged DoC. At discharge from trauma services, care by professionals who are competent to assess and treat unresponsive patients is obligatory. With the promulgation of guidelines by a joint committee of the American Academy of Neurology, the American Congress of Rehabilitation Medicine, and the National Institute on Disability, Independent Living, and Rehabilitation Research, we can no longer claim ignorance regarding the competencies needed to treat this population.
Tailoring care to the needs of people with DoC also includes placement in health care settings that can optimize rehabilitative treatments while protecting against complications that limit recovery. Movement to and between a long-term care facility and specialized inpatient rehabilitation programs should not be based on criteria developed for other populations of patients. For instance, there is no medical basis for the requirement that a person with a DoC actively participate in rehabilitation therapies when passive motor and cognitive interventions are the appropriate care. Effective and humanitarian treatment requires monitoring and coordination across a number of health care settings including, in some cases, the patient’s own home. A person with a prolonged DoC deserves periodic reassessment to assure that complications are not developing and, more important, to detect when an improvement in arousal or responsiveness necessitates a change in therapeutic approach. This type of coordinated approach across settings is not a strength of the US health care system.
Other Western countries—most notably Great Britain and the Netherlands—have recognized the unique needs of persons with prolonged DoC and have designed health care pathways that optimize the opportunity for a person to attain their full potential. It should not be a matter of luck, personal means, or a relentless family that conveys the opportunity to regain responsiveness after prolonged DoC. We have the knowledge to provide appropriate care to this population; it is now a matter of will.
John D. Corrigan
Professor, Department of Physical Medicine & Rehabilitation
The Ohio State University
As I read Joseph J. Fins’ essay, I was trying to envision the article’s optimal target audience. As a neurologist who cares for critically ill patients with acute brain injuries from trauma, stroke, and hypoxic-ischemic brain injury after cardiac arrest, the clinical details of cases such as described are familiar. But this story is of a person, not a patient, and it reinforced the view that my particular domain, the neurological intensive care unit, has afforded me. People such as Terry Wallis and their families have a complex journey that involves direct and indirect intersections with intensive care units, skilled nursing facilities, rehabilitation facilities, hospitals, outpatient clinics, and insurance payors (governmental and private), as well as with the doctors, nurses, therapists, administrators, social workers, ethicists, and interest groups that inhabit these organizations, and with legislators who craft policies that overarch all. Mr. Wallis’s poignant story seems to be one of disconnection. I would like to think that each of these groups that needs to hear this story has good intentions, but there is a clear lack of ownership, follow-through, and “big picture” that may even incentivize leaving those with severe neurologic impairments (or more often their families) to find their own way.
Several potentially disparate aspects of cases such as Mr. Wallis’s bear discussion and emphasize the need for a holistic patient-centered view of his experience. These include prognostic assessment by medical personnel, values-based judgment of living a disabled life, and the civil rights that consciousness necessitates. It is increasingly recognized that inaccurate early negative prognostication can lead to a self-fulfilling prophecy of death or poor outcome if care is limited as a result of this assessment. Medically, prognostic uncertainty can be considered as the difference between “phenotype” (what a patient looks like on clinical examination) and “endotype” (the underlying biological mechanism for why the patient looks like this). The author’s discussion of cognitive-motor dissociation is part of this consideration, as is clinical humility in prognostication (as described by the neurologist-bioethicist James Bernat). The comment that Mr. Wallis’s treating doctors “couldn’t imagine that the life he led was worth living” is also a common paternalistic view that pushes clinicians away from patients and diminishes the value of patients’ and their families’ goals of care. And perhaps most novel for treating physicians, the idea that civil rights of patients with impaired consciousness might be compromised if desired care is not accessible and provided is compelling and difficult to rebut. It is too easy for patients with disorders of consciousness to get disconnected.
A recent study by Daniel Kondziella and colleagues, reported in the journal Brain Communications, estimated that 103,000 overall cases of coma occur in the United States annually. Efforts such as the Neurocritical Care Society’s Curing Coma Campaign seek to push the science toward recovery and bring a more holistic view of the care of patients across their experience. The story of Terry Wallis is not a one-off. I hope his journey can get to the audiences who need to hear.
J. Claude Hemphill III
Professor of Neurology
University of California, San Francisco
Cochair, Curing Coma Campaign
Neurocritical Care Society
Joseph J. Fins narrates Terry Wallis’s fascinating and important case and explains the scientific and social lessons it taught. Here, I offer an additional scientific insight from the story and discuss its implications.
Neurologists and neuroscientists who studied Mr. Wallis’s case investigated the mechanism to explain the unusually long delay in his improvement following a serious traumatic brain injury. They performed brain MRI studies using diffusion tensor imaging, a technology that assesses the integrity of white matter tracts, which contain nerve fibers that serve to connect the cerebral cortex with different areas of the brain and spinal cord. These studies showed that the mechanism of his brain damage was diffuse axonal injury. This type of brain injury is produced by blunt rotational head trauma causing widespread severing of the axons of brain neurons. Additionally, observers noticed that the white matter changes evolved over time. They interpreted these findings as gradual axonal regrowth of the severed axons that likely accounted for Mr. Wallis’s long-delayed improvement. Presumably, it took nearly two decades for the slow axonal regrowth to adequately reconnect disconnected brain regions and restore his ability to talk.
Most types of serious global brain injury, such as those caused by trauma or lack of blood flow during cardiac arrest, primarily damage brain neurons. By contrast, diffuse axonal injury generally spares the cell bodies of neurons and damages only their axons. Diffuse axonal damage disconnects brain neurons from each other and produces severe brain dysfunction. The resulting widespread neuronal disconnection is sufficient to induce a disorder of consciousness such as the vegetative state or, as in Mr. Wallis’s case, the minimally conscious state.
Although often severe, diffuse axonal injury may have a better prognosis than a brain injury of similar magnitude that primarily damages neurons, such as that produced by absent brain circulation during cardiac arrest, as in the widely publicized case of Teresa Schiavo 20 years ago. Sheared axons with intact neuronal cell bodies retain the capacity to regrow, whereas severely damaged neurons usually do not. As the article explains, the Terry Wallis case illustrates that improvement in neurological function after severe brain injury remains possible, even after many years, particularly when the mechanism is diffuse axonal injury.
James L. Bernat
Professor of Neurology, Active Emeritus
Dartmouth Geisel School of Medicine