PRACTICE ISSUES IN NEUROLOGY: TRAUMATIC BRAIN INJURY: ENHANCING OUR ABILITY TO IMPROVE COMMUNICATION WITH FAMILIES

Jay H. Rosenberg In addition to the lifelong learning of new clinical and scientific knowledge, neurologists must understand the constantly evolving environment in which they practice. Changes occur rapidly in reimbursement and regulatory areas, in the integration of evidence-based medicine, and in the implementation of patient safety measures into clinical practice. This section of presents a case-based example of these issues as they relate to the clinical topic. These vignettes are written by neurologists with particular experience in systems-based practice and practice-based learning and improvement. INTRODUCTION A catastrophic traumatic brain injury is a sudden, life-changing event for both the patient and family. Families are frequently thrust into the quagmire of the medical system, which they neither understand nor are prepared to deal with. The vocabulary is foreign, and frequently information is contradictory and often provided in an uncoordinated approach. The families are anxious and may be faced with very difficult life and death decisions. Families want to know if their loved one will survive and the anticipated quality of life. To optimize communication, health care professionals must decide what information the families are ready to hear and when. The journey from the time of onset of the acute injury through recovery can be compared to crossing from one valley to another over a winding and mountainous road. This road is potentially very challenging and involves traversing many dangerous mountain passes that may temporarily or permanently block forward progress. The four different valleys traversed are an analogy for the four levels of care that constitute a traumatic brain injury journey from onset to recovery: acute trauma care (Valley of the Shadow of Death), long-term chronic care (Valley of Limbo), acute rehabilitative care (both inpatient and outpatient) (Valley of Enlightenment), and postrehabilitative care to recovery (Valley of Adjustment and Reconciliation). By means of a patient vignette, each level of care will be described and the pivotal information identified. This identified data potentially can predict the timing and progression to the next level of care. The ideal time and manner of communication of this information to the family will be discussed.

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Relationship Disclosure: Dr Rosenberg has received personal compensation from Biogen Idec; EMD Serono, Inc.; and Teva Neuroscience as a member of their speakers bureaus, and from Acorda Therapeutics and Allergan, Inc., as an advisory board member. Dr Rosenberg has received or anticipates receiving personal compensation for a professional report for plaintiff reference and serving as a defendants expert witness for a multiple sclerosis case for a school district. Unlabeled Use of Products/Investigational Use Disclosure: Dr Rosenberg has nothing to disclose.

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ACUTE TRAUMA CARE THE VALLEY OF THE SHADOW OF DEATH

Case A 47-year-old physician had a cycling accident witnessed and reported by bystanders. His helmet was cracked, with blood lining the inside surface; other injuries included a right scapular fracture, multiple bilateral rib fractures, left orbital fracture, and a fracture of the right zygoma. He had a Glasgow Coma Scale score of 5 (decorticate right upper extremity, decerebrate left upper extremity) at the scene and was air evacuated to the local trauma center. By day 6 he had some movement in most of his extremities; on day 9 his chest tube was removed; and on day 17 his intracranial pressure was stabilized. His wife was at his bedside almost immediately. Her initial concern was whether or not he would survive. Most of the staff remained positive and projected relative optimism. Later, as she turned her attention from survival to quality of life, she finally asked, Will he ever practice medicine again? One of the residents answered negatively. The patients wife felt that the response could have been framed in a more positive manner such as, He is doing well now. It is way too early to be able to predict his full level of recovery. Families are most connected to the patient and frequently make the first observation of their loved ones responsiveness. While in the valley of the shadow of death, two important patient responses should be discussed with the family to help them feel they are part of the recovery process and enlist their help: (1) arousal or eye opening and (2) responsiveness to stimulation. The definition of coma is that period after injury when the eyes remain closed and the patient is unconscious and not responsive to any stimuli. Coma begins 30 minutes after loss of consciousness has occurred.1 Inform the family that between 2 and 6 weeks after coma onset, arousal occurs when the patient opens his eyes and normal wake-sleep cycles return. The absence of specific responses to stimulation and voluntary bodily functions defines the vegetative state (full arousal, no responsiveness).2 Inconsistent, but definite responses to tactile, verbal, visual, or auditory stimulation define the minimally conscious state (full arousal, partial inconsistent responsiveness).3 A consistent response to stimulation indicates a state of full responsiveness and arousal. This state, the lowest level of recovery, defines a time of full consciousness yet profound dependency for all activities of daily living. There is no consensus on a descriptive term. During week 4, the patients eyes opened spontaneously, and he developed wake-sleep cycles but showed no responsiveness or recognition of the staff or his wife. He was transferred by air ambulance to a long-term care facility.

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LONG-TERM CHRONIC CARETHE VALLEY OF LIMBO Through week 5, the patient was weaned off the ventilator and showed signs of responsiveness. At his wifes insistence, amantadine was instituted as this may be helpful in improving long-term alterations of consciousness in traumatic brain injury.4 At the beginning of week 6, he suddenly talked for the first time, clearly stating, I woke up! When he saw his wife, he yelled, No! Go away!
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As in this case, a patient may suddenly develop full consciousness or enter a state of minimal consciousness, either emerging slowly to full consciousness or remaining in the minimal conscious state. Educating the family on the various techniques used to stimulate the patient and the responses that are potentially significant can create helpful and accurate observers. The JFK Coma Recovery Scale established and validated by Joseph Giacino, PhD, is very useful for this purpose (Appendix B).5 The scale tests six modalities, including auditory, visual, motor, oromotor/verbal function, communication, and arousal. Subscale items are hierarchically arranged with specific items tied to existing diagnostic criteria for coma, vegetative state, and minimally conscious state. Addressing the patient by his name is a helpful strategy when attempting arousal through verbal stimulation. Employing a mirror to see whether the patient follows his own image can help demonstrate visual responsiveness. Presenting everyday objects in the visual field can validate that the patient attends, grabs, or appropriately uses the object when directed. An inconsistent response to several trials establishes minimal consciousness, and consistent responses in all modalities reflect full consciousness. During week 6, the patient started speech therapy, requiring him to label objects and colors, but he was rebellious and threw the objects. He slept a great deal during the day and at other times wanted to walk constantly. A sitter was required to assure that the patient remained safe, but once it was deemed he could participate in therapy 3 hours a day, he was appropriately transferred to acute rehabilitation.

ACUTE REHABILITATION THE VALLEY OF ENLIGHTENMENT Patients and families often come to acute rehabilitation with an expectation that patients will walk independently out the door at the end of their stay and require no further care or supervision and that they will remain in acute rehabilitation until this is achieved, no matter how long this takes. On admission to acute rehabilitation, a complete evaluation by all therapies (including but not limited to physical, occupational, and speech therapies) is used to develop a treatment plan with appropriate goals. It is the responsibility of the team to communicate this treatment plan to the patient and the family and emphasize the achievable goals that will potentially be met by the end of the stay. If it is possible to estimate early what resources might be needed to facilitate future discharge, this information should be communicated in an ongoing way to the family. During the first days of his stay, the patient was depressed, agitated, obstructive, and obstinate, showing disgust with the entire rehabilitative process. Psychiatric consultation was obtained, and he began to respond to psychotropic and antidepressant medications. A severe Wernicke aphasia was diagnosed, and standard aphasia treatment sessions were modified to be more engaging. Instead of flash cards showing pictures of unrelated objects, objects with hospital and medical terminology, such as IV poles, a gurney, or scrubs, were used, improving his tolerance and cooperativeness. The patient worked extensively on his balance. The occupational therapist worked to improve his ability for self-care. With the patient, a list of goals for self-care and mobility were created and posted in his room. When completed, he could be discharged and transitioned to the outpatient brain injury program.

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Standard terminology for assessment and communication among the professional brain injury providers was helped by the use of the Rancho Los Amigos Cognitive Levels of Functions Scale (Appendix C),6 which evaluates patients from level I, which might be considered equivalent to coma, to level VII, where the patient requires only minimal assistance with appropriate oriented behavior. Levels II and III are equivalent to various stages of the vegetative state, and level IV to emergence from the vegetative state on to minimal consciousness and finally to full consciousness. Active rehabilitation involves levels IV through VII. After level VII, the usefulness of the scale decreases by ambiguity of the description. Since levels IV and V both require maximal assistance, the distinction between the two is the presence or absence of agitation resulting in the inability to cooperate with treatment efforts. Confusion is present in both levels V and VI; they are distinguished from each other by inappropriate versus appropriate behavior and maximal assistance versus moderate assistance. Rancho Los Amigos cognitive level VII requires only minimal assistance with appropriate oriented behavior. A clearer and more understandable means of communicating potential level of patient functions to the family relies on the Functional Independence Measure (FIM) scale7 adapted to activities of daily living (ADLs) and motor and cognitive functions. The FIM scales describe six levels of function, from total assist, where the patient can offer no help with the activity, to modified independent, with 100% effort of the patient. The FIM provides a clearer way of communicating to the family the various stages of patient function. When the patient is judged by the team to be safe at anywhere from a minimal assist to modified independent level, a transition is made from the inpatient setting to the outpatient setting. At this point, the direction of therapy may incorporate higher levels of function as it pertains to achieving mastery over those tasks deemed necessary to reintegrate and function highly in society.

POSTREHABILITATIVE CARETHE VALLEY OF ADJUSTMENT AND RECONCILIATION Active recovery is a continuum and ongoing for the first year after acute traumatic brain injury. The rate of recovery is generally very rapid for the first 6 months and less rapid over the remaining 6 months. After the first year, recovery levels out and then waxes and wanes. In very rare cases, some improvements are still seen. Eight months after the injury, the patient continued to improve. Major concerns included decreased auditory processing speed and some hesitation with word finding. He was able to perform all basic and intermediate levels of ADLs and was placed at the modified independent level. He participated in some advanced ADLs in that he sat in on some patient conferences without any direct patient input and was driving. After discharge from inpatient rehabilitation, he began outpatient therapy in a brain injury day treatment program 5 days per week. This patient is on the road to excellent functional recovery with achievement of many advanced ADLs, but at the moment no good functional outcome scale is available to help communicate this to him and his family. Jennett and Bond developed the Glasgow Outcome Scale8 in order to classify recovery outcomes. The scale consists of five outcomes: (1) death, (2) persistent vegetative state, (3) severe disability, (4) moderate disability, and (5) good recovery. This patient would be classified at the good recovery
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level. This term is not able to capture meaningful differences in higher levels of function. A more meaningful scale that describes outcomes and links them to functional descriptions that correlate with basic, intermediate, and advanced ADLs is needed. Patients with head injuries and their families must maintain hope and a positive attitude couched in the reality of the situation. Communicating the key information at the appropriate time will help facilitate travel through the valleys of recovery.

ACKNOWLEDGMENT I thank Dawn Holman, PhD, for review and suggestions for improvement of this article.

REFERENCES
1. Posner JB, Saper CB, Schiff N, Plum F. Plum and Posners diagnosis of stupor and coma fourth edition. New York: Oxford University Press, 2007. 2. Quality Standards Subcommittee of the American Academy of Neurology. Practice parameters: Assessment and management of patients in the persistent vegetative state (Summary Statement). Neurology 1995;45(5):1015 1018. 3. Giacino JT, Ashwal S, Childs N, et al. The minimally conscious state: definition and diagnostic criteria. Neurology 2002;58(3):349 353. 4. Meythaler JM, Brunner RC, Johnson A, Novack TA. Amantadine to improve neurorecovery in traumatic brain injury-associated diffuse axonal injury: a pilot double-blind randomized trial. J Head Trauma Rehabil 2002;17(4):300 313. 5. Giacino JT, Kalmar K, Whyte J. The JFK Coma Recovery Scale-Revised: measurement characteristics and diagnostic utility. Arch Phys Med Rehabil 2004;85(12):2020 2029. 6. Hagan C. Levels of cognitive functioning: rehabilitation of the head injured adult: comprehensive physical management, 3rd ed, Downey California: Professional Staff Association of the Rancho Los Amigos Hospital, Inc. 7. Braddom Randall L. Physical medicine and rehabilitation, e-edition: text with continually updated online reference. 3rd ed. Philadelphia: Saunders, 2006. 8. Jennett B, Snoek J, Bond MR, Brooks N. Disability after severe head injury: observations on the use of the Glasgow Outcome Scale. J Neurol Neurosurg Psychiatry 1981;44(4):285 293.

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