Continuum Tb i Pract 2010

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Jay H. Rosenberg

In addition to the lifelong learning of new clinical and scientific knowledge, neurologistsmust understand the constantly evolving environment in which they practice. Changesoccur rapidly in reimbursement and regulatory areas, in the integration of evidence-basedmedicine, and in the implementation of patient safety measures into clinical practice.

This section of presents a case-based example of these issues as theyrelate to the clinical topic. These vignettes are written by neurologists with particularexperience 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 patientand family. Families are frequently thrust into the quagmire of the medical system, whichthey 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 thefamilies are ready to hear and when.

The journey from the time of onset of the acute injury through recovery can becompared to crossing from one valley to another over a winding and mountainous road.This road is potentially very challenging and involves traversing many dangerous mountainpasses that may temporarily or permanently block forward progress. The four differentvalleys traversed are an analogy for the four levels of care that constitute a traumatic braininjury 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 andoutpatient) (Valley of Enlightenment), and postrehabilitative care to recovery (Valley of

Adjustment and Reconciliation). By means of a patient vignette, each level of care will bedescribed and the pivotal information identified. This identified data potentially can predictthe timing and progression to the next level of care. The ideal time and manner ofcommunication of this information to the family will be discussed.

PRACTICE ISSUES IN NEUROLOGY:

TRAUMATIC BRAIN INJURY:

ENHANCING OUR ABILITY TO

IMPROVE COMMUNICATION

WITH FAMILIES

Relationship Disclosure: Dr Rosenberg has received personal compensation from Biogen Idec; EMD Serono, Inc.; and Teva Neuroscience as amember of their speakers bureaus, and from Acorda Therapeutics and Allergan, Inc., as an advisory board member. Dr Rosenberg hasreceived 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.

Continuum Lifelong Learning Neurol 2010;16(6):166170Copyright 2010, American Academy of Neurology. All rights reserved.

Copyright @ American Academy of Neurology. Unauthorized reproduction of this article is prohibited.


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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. Hishelmet was cracked, with blood lining the inside surface; other injuries included a rightscapular fracture, multiple bilateral rib fractures, left orbital fracture, and a fracture of theright 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 traumacenter. By day 6 he had some movement in most of his extremities; on day 9 his chest tubewas removed; and on day 17 his intracranial pressure was stabilized.

His wife was at his bedside almost immediately. Her initial concern was whether or nothe 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 heever practice medicine again? One of the residents answered negatively. The patients wifefelt that the response could have been framed in a more positive manner such as, He isdoing 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 oftheir loved ones responsiveness. While in the valley of the shadow of death, twoimportant patient responses should be discussed with the family to help them feel they arepart 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 whenthe 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 whenthe patient opens his eyes and normal wake-sleep cycles return. The absence of specificresponses to stimulation and voluntary bodily functions defines the vegetative state (fullarousal, no responsiveness).2 Inconsistent, but definite responses to tactile, verbal,visual, or auditory stimulation define the minimally conscious state (full arousal, partialinconsistent responsiveness).3A consistent response to stimulation indicates a stateof full responsiveness and arousal. This state, the lowest level of recovery, defines a timeof full consciousness yet profound dependency for all activities of daily living. There is noconsensus 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 wastransferred by air ambulance to a long-term care facility.

LONG-TERM CHRONIC CARETHE VALLEY OF LIMBO

Through week 5, the patient was weaned off the ventilator and showed signs ofresponsiveness. At his wifes insistence, amantadine was instituted as this may be helpfulin improving long-term alterations of consciousness in traumatic brain injury.4At thebeginning 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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PRACTICE ISSUES IN NEUROLOGY

As in this case, a patient may suddenly develop full consciousness or enter a state ofminimal 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 theresponses that are potentially significant can create helpful and accurate observers. The JFKComa Recovery Scale established and validated by Joseph Giacino, PhD, is very useful forthis purpose (Appendix B).5 The scale tests six modalities, including auditory, visual,motor, oromotor/verbal function, communication, and arousal. Subscale items are hierarchicallyarranged 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 strategywhen attempting arousal through verbal stimulation. Employing a mirror to see whetherthe patient follows his own image can help demonstrate visual responsiveness. Presentingeveryday objects in the visual field can validate that the patient attends, grabs, orappropriately uses the object when directed. An inconsistent response to several trials

establishes minimal consciousness, and consistent responses in all modalities reflectfull consciousness.

During week 6, the patient started speech therapy, requiring him to label objects andcolors, but he was rebellious and threw the objects. He slept a great deal during the dayand at other times wanted to walk constantly. A sitter was required to assure that thepatient remained safe, but once it was deemed he could participate in therapy 3 hours aday, he was appropriately transferred to acute rehabilitation.

ACUTE REHABILITATIONTHE VALLEY OF ENLIGHTENMENT

Patients and families often come to acute rehabilitation with an expectation that patientswill walk independently out the door at the end of their stay and require no further careor supervision and that they will remain in acute rehabilitation until this is achieved, nomatter how long this takes. On admission to acute rehabilitation, a complete evaluation byall therapies (including but not limited to physical, occupational, and speech therapies) isused to develop a treatment plan with appropriate goals. It is the responsibility of the teamto communicate this treatment plan to the patient and the family and emphasizethe achievable goals that will potentially be met by the end of the stay. If it is possible toestimate early what resources might be needed to facilitate future discharge, this informationshould 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 severeWernicke aphasia was diagnosed, and standard aphasia treatment sessions were modifiedto be more engaging. Instead of flash cards showing pictures of unrelated objects, objectswith hospital and medical terminology, such as IV poles, a gurney, or scrubs, were used,improving his tolerance and cooperativeness. The patient worked extensively on hisbalance. The occupational therapist worked to improve his ability for self-care. With thepatient, 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 braininjury program.




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Standard terminology for assessment and communication among the professional braininjury providers was helped by the use of the Rancho Los Amigos Cognitive Levels of

Functions Scale (Appendix C),6which evaluates patients from level I, which might beconsidered equivalent to coma, to level VII, where the patient requires only minimalassistance with appropriate oriented behavior. Levels II and III are equivalent to variousstages of the vegetative state, and level IV to emergence from the vegetative state on tominimal consciousness and finally to full consciousness. Active rehabilitation involveslevels IV through VII. After level VII, the usefulness of the scale decreases by ambiguity ofthe description. Since levels IV and V both require maximal assistance, the distinction betweenthe two is the presence or absence of agitation resulting in the inability to cooperate withtreatment efforts. Confusion is present in both levels V and VI; they are distinguished fromeach other by inappropriate versus appropriate behavior and maximal assistance versusmoderate assistance. Rancho Los Amigos cognitive level VII requires only minimal assistancewith appropriate oriented behavior.

A clearer and more understandable means of communicating potential level of patientfunctions to the family relies on the Functional Independence Measure (FIM) scale7 adaptedto activities of daily living (ADLs) and motor and cognitive functions. The FIM scales describesix 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 wayof 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 assistto modified independent level, a transition is made from the inpatient setting to theoutpatient setting. At this point, the direction of therapy may incorporate higher levels offunction as it pertains to achieving mastery over those tasks deemed necessary to reintegrateand 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 braininjury. The rate of recovery is generally very rapid for the first 6 months and less rapidover the remaining 6 months. After the first year, recovery levels out and then waxes andwanes. In very rare cases, some improvements are still seen.

Eight months after the injury, the patient continued to improve. Major concerns includeddecreased 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 modifiedindependent level. He participated in some advanced ADLs in that he sat in on somepatient conferences without any direct patient input and was driving. After discharge frominpatient rehabilitation, he began outpatient therapy in a brain injury day treatmentprogram 5 days per week.

This patient is on the road to excellent functional recovery with achievement of manyadvanced ADLs, but at the moment no good functional outcome scale is available to helpcommunicate this to him and his family. Jennett and Bond developed the GlasgowOutcome Scale8 in order to classify recovery outcomes. The scale consists of fiveoutcomes: (1) death, (2) persistent vegetative state, (3) severe disability, (4) moderatedisability, 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 theappropriate 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 fourthedition. 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):10151018.

3. Giacino JT, Ashwal S, Childs N, et al. The minimally conscious state: definition and diagnosticcriteria. Neurology 2002;58(3):349353.

4. Meythaler JM, Brunner RC, Johnson A, Novack TA. Amantadine to improve neurorecoveryin traumatic brain injury-associated diffuse axonal injury: a pilot double-blind randomized trial.J Head Trauma Rehabil 2002;17(4):300313.

5. Giacino JT, Kalmar K, Whyte J. The JFK Coma Recovery Scale-Revised: measurement characteristicsand diagnostic utility. Arch Phys Med Rehabil 2004;85(12):20202029.

6. Hagan C. Levels of cognitive functioning: rehabilitation of the head injured adult: comprehensivephysical management, 3rd ed, Downey California: Professional Staff Association of the RanchoLos Amigos Hospital, Inc.

7. Braddom Randall L. Physical medicine and rehabilitation, e-edition: text with continually updatedonline 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):285293.

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Continuum Tb i Pract 2010

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