Therefore, it’s a matter of awareness…

We cannot expect our patients to benefit from treatment unless they can be active participants in the treatment. Because cognitive functions that once were automatic must be done after injury on a voluntary, intentional basis in order for the patient to purposely work on a problem, the patient must be aware of what the specific problem is . Too often, nonspecific problems (eg, labeling a problem as a “visuospatial deficit” when the specific problem actually is a deficit to visual scanning) or mislabeling problems (eg, using the term “short-term memory” to describe an impairment when the actual problem is a memory storage deficit) are used, and actually serve as impediments to assisting the patients to make progress in their rehabilitation. On the other hand, once the patient understands the specific problem, linking the therapies to that specific problem makes the therapy meaningful and able to be used by the patient, who then can become an active participant in the process. Without a patient’s understanding of her specific problems and the knowledge that the therapeutic activities are intended to address those specific problems, successful treatment will be a matter of chance and often will simply be ineffective.

The importance of a comprehensive evaluation and ongoing assessments

It should be apparent that to help a patient to understand his specific cognitive deficits, specific impairment (the patient’s deficits to his metacognition) must be recognized and understood by the treatment team member. Clearly then, treatment can only follow appropriate assessment. It is important that in addition to assessment by team members from various disciplines, the assessment also involve a evaluation by an experienced neuropsychologist who can conduct comprehensive testing, including the domains of attention, concentration, memory, speech and language functions, visuospatial abilities, and problem-solving involving verbal, visual, and tactile information. A comprehensive evaluation of this type is necessary to prevent seeing the patient too narrowly (referred to in lay terms as “looking at one part of the elephant”). This issue can be demonstrated by the very common error, seen by those working with children, in which the youngster is misdiagnosed as having autism when in fact he is globally impaired. It is also critical to have a comprehensive neuropsychological evaluation in order that the problem areas be considered in relation to the individual’s pretrauma functioning, so that the nature and extent of the impairments and remaining strengths are known. Low scores may represent the individual’s lifelong functioning, or may represent extreme changes from their pretrauma capacities. Without a comprehensive evaluation by a neuropsychologist, it is not possible to determine this, and appropriate treatment plans cannot be made.

Assessment is critical to the initiation of any treatment plan, but also is a requirement of any ongoing treatment. There is simply no way to gauge progress unless it is measured, no way to know when to modify a program, and no way to determine when treatment should end. For this reason, all treatment must be such that it produces results that are observable and measurable. Rehabilitation professionals tend to be particularly caring and interested in the welfare of their patients, wanting them to recover as much function as possible. They are known for their enthusiasm. As such, they are vulnerable to seeing meaningful change where change may in fact be slight, and continuing with treatments that are only minimally helpful. Patients, on the other hand, once aware they have a problem, may either be overly pessimistic about the possibility of ever experiencing meaningful improvement, or may be overly optimistic about the likelihood returning to pretrauma functioning at work, at home, or in their relationships. The only way for both therapist and patient to understand reality and to make appropriate decisions is to incorporate ongoing assessments, standardized whenever possible, into the treatment process.

Ongoing assessment also is critical in determining when it is appropriate to terminate with a patient. Terminating treatment is a difficult process, not only for the patient, but also for the therapist, who may recognize all too clearly that the patient has not improved as much as was hoped. Keeping a patient in treatment indefinitely is not a solution. This is not typically a problem where third-party payers are involved, because they often simply refuse to pay, forcing treatment to be discontinued. If the patient can continue with the payment himself privately, or if there is a third-party payer that may pay almost indefinitely (as is the case, for example, in occasional workman’s compensation cases or following a personal injury suit), it is unfair not only from a monetary standpoint but also to the well-being of the patient to continue with treatment that is essentially endless, or in which a treatment end point is undefined. Although to many therapists it may seem a benefit to “keep hope alive” by continuing with never-ending treatment, it actually is a disservice to the individual, because it serves as an impediment to the development of a reality-based adjustment. Coming to terms with the consequences of head trauma can be an horrifically harsh experience, but prolonging the process by encouraging unrealistic expectations only makes the adjustment more difficult. We cannot make our patients happier by continuing a process that encourages them to avoid reality. And we cannot wait until the patient chooses to end treatment—that may never happen. It is essential that we take the initiative in terminating treatment, and that we not collude with the patient’s denial system. One way to deal with this situation is to include the neuropsychologist in the termination process, so that the neuropsychologist can help the patient deal with his feelings about coming to the end of the treatment. The process is painful because there is more involved in termination than the end of the relationship with the therapist. In addition, termination frequently means the end of the expectation that there will be additional progress. Some of the worst fears of the patient often are being realized: the head injury truly was a tragedy, and its residual consequences likely are permanent. With the help of a neuropsychologist, the pain can serve as a catalyst by which the patient can reach this acceptance, and can consider and take advantage of the possibilities that are actually available.

Selecting problems to address

Thoughtful selection of which problems will be addressed also requires a team approach. Certainly, given the nature of brain functioning, certain problems should be addressed before others. For example, it would be inappropriate to work on retraining arithmetic skills if the patient were not yet fully aroused. Once the person is fully alert, he may be quite able to do arithmetic problems. Complex deficits may disappear as the underlying deficits are remediated. This may seem patently obvious, but errors such as this are common. They occur most often when the overall functioning of patients is not considered (where each therapist works on the areas of functioning he feels fall within his discipline), and when adequate communication between therapists is not maintained. The author has sat in conference and listened to one therapist report that a patient was unable to add or subtract, whereas the next reported using a point-system to address the same patient’s behavioral problems. Clearly, the point system was not going to work. Though both therapist “reported,” neither listened. The order of treatment, therefore, needs to be determined through consideration of all of the patient’s abilities and deficits, because different cognitive deficits have different anatomic and functional neural substrates that might vary greatly depending on the demands of the task . Only a handful of problems should be addressed at any given time, so that the capacities of the patient are not overwhelmed. A variety of tools (eg, puzzles, worksheets or workbooks, computer programs) can be used, but all should address the same problems identified by the team. Often the team will include a problem that is selected because it is particularly disabling (eg, standing too close to others), but in general, the order of treatment will be drawn from knowledge of how the brain functions.

Remediating and compensating: altering the person versus altering the world

Within the system being described, there are three ways in which therapy can be approached. Patients can be taught remediations, compensations, or strategies for specific situations.

Selection of problem to be rehabilitated must include recognition of which problems actually can be remediated and which can only be compensated for. Some cognitive problems can actually be remediated. The goal in remediation is improvement to the underlying metacognitive problem itself. For example, visual scanning can be remediated directly through exercises, whereas restoration of secondary sensory processes cannot. Thus, some problems can only be compensated for. Cicerone and his colleagues report, for example, that some compensations, such as the use of various self-management strategies and a diary, can be beneficial in some individuals, even many years post-injury. It is important to avoid attempting to remediate deficits that can only be compensated for, so that time and money are not wasted. It also is a mistake to help a patient compensate for a problem that can be remediated. Erring in this direction results in less functionality. Experience and a knowledge of the literature on evidenced-based cognitive rehabilitation, such as that cited below, are required to know the difference, and a skilled team takes the literature and experience of clinicians into account when designing their treatment programs.

Whether remediative or compensatory strategies are used, the goal is that the improvement generalize to instances in the individual’s life outside the treatment setting. There are occasions when this is not a possible goal. For example, in more severely injured individuals, treatment sometimes is geared not to remediation or to compensation, but rather to altering the world around the patient. This is virtually always a less satisfactory approach, but one that is sometimes required when the patient is so impaired that he is unable to improve with remediation or compensation strategies. For example, placing signs on walls to help direct a patient may be useful to the individual, but is not a strategy that can generalize outside that particular setting. Such alterations of the outside world are avoided when possible because they cause the individual to appear more impaired to observers.

Other strategies that do not involve actual remediations or compensations are those that teach to very specific situations. For example, teaching someone how to use a particular train to get from his home to his work site may be useful, but it does not leave the patient with a means for dealing with traveling to some other destination. Again, this may be helpful, but is not a method that allows for generalization, and consequently is less effective than teaching remediative compensatory strategies, though it may be necessary for patients who have more severe injuries and who are incapable of learning techniques that would be generalizable. Treaters should train to specific situations thoughtfully, with the understanding that that is what they are doing and the knowledge that it may be less satisfactory in the long term.

Linking the problem to the solution

In order to maximize the opportunity for treatment to generalize from one situation to another, it is essential that the metacognitive deficits be specifically identified by the therapist and the patient, as noted above. It then is critical that the specific problem be linked for the patient with a specific solution. This link between the identified problem and the solution to the problem is what constitutes the treatment. Again, treatment is not the tool being used or the functional goal being sought. Treatment is the combining of the problem with its solution. For example, it is not sufficient to provide the patient with exercises that increase mental speed without helping the patient to understand why he is doing the exercises. This linking often can be accomplished through repeated explanations (eg, “Because you have difficulty doing things quickly enough, you are going to sort these colored blocks as fast as you can, and we will keep track of the time.”). This combination of identified problem with its solution can be written in the patient’s notebook (eg, “Because you have difficulty doing things quickly enough, we practiced having you sort colored blocks as fast as you could, and we kept track of the time.”). This same treatment can be used across therapies to work on specific functional goals in each therapy. These are the treatments that must be agreed upon by the therapists jointly. The likelihood that treatment will generalize from the therapeutic setting to the outside worlds increases from the repetition of the same treatment across disciplines and with different functional goals, and it is the underpinning of what brings about meaningful change following traumatic brain injury.