Goal Setting and Coordination of Care: Tone Management in Brain Injury

Few approaches to the care of the person with brain injury have changed as much in the last 15-20 years as the approach to spasticity management. There is an increasing interest in treating "spasticity" and the upper motor neuron syndrome (UMNS), though the potential benefits are often overlooked by a host of neurorehabilitation professionals. How often have our patients been told that they should be satisfied that they are alive; that they should just accept that they are “good enough” and have "plateaued." For some, this may be enough. For many, it is not and need not be. Intervening in the management of hypertonicity offers new hope and potential.

The treatment plan begins with the goals of treatment. Goals are influenced by the vision of what might be possible, function, options for therapy, finances, stage of recovery, dedication, and other clinical considerations. Goals may be passive or active. "Passive goals" refer to treating to facilitate care, such as hygiene, splinting, positioning, etc. in patients that are more dependent. Passive goals may be determined early after injury or be an ongoing consideration. Whether early or late, there is a degree to which passive goals can be considered pre-functional. For example, setting a goal of decreasing excessive tone or maintaining /increasing range, can be a precursor to eventually developing active movement. A goal of improved wheelchair positioning may not only prevent skin breakdown and contractures, it can translate to improved weight bearing for transfers and bone integrity, improved standing programs and possibly affect gait. Decreasing adductor tone in the lower limbs can make the difference between requiring 2-3 caregivers vs. one.

"Active goals," implies that there is a gain of more active function. Goals like improved transfers, increased FIM scores, improved gait, are often touted as a goal for interventions. However, medical professionals must keep in mind that we tend to underestimate the value of relatively "small" gains that can have significant meaning for our patients. Injecting toxin into the upper extremity may allow easier access to an augmentative communication device, followed by therapy that taps into previously unrecognized movement and motor control. Intrathecal baclofen (ITB) therapy allowing improved wheelchair positioning or transfers, but may also be a factor that allows improve¬ment in upper extremity function. It is a question of how we orchestrate the best possible outcomes for patients by integrating the variety of clinical and therapeutic interventions.

Advantages of spasticity that are often described include maintenance of muscle bulk, support of the circulatory system, decrease of potential edema from immobility, prevention of deep venous thromboses, assistance in transfers and gait. In some cases, however and to variable degrees, decreasing spasticity can afford one the opportunity to develop more motor function. Significantly, interventions for spasticity management can be fine tuned from one cycle to the next. If someone has the perception of being too "weak" after receiving neurotoxin injections, the dose can be adjusted at the next injection session based on their response. If someone reports being too loose after an ITB pump dose adjustment, the dose can be titrated accordingly. Sometimes a patient may get worse before getting better, or use assorted descriptions to describe changes in their movement quality or pattern.

Oral medications are often prescribed but have not been shown to improve function. There is a difference between having one’s "tone" decreased and being able to transfer in and out of a vehicle and being relaxed and sedated in class. Medications that limit cognition or affect behavior often have limited usefulness and fly in the face of the general philosophy of treating brain injury. We aim for increased alertness, cognition, balance and movement. The risk-benefit ratio of oral medications for the UMN syndrome may not be of great value in the end. Oral medications generally prescribed include oral baclofen, dantrolene, diazepam and tizanidine. They may be prescribed in various combinations, with neurotoxins, pumps, etc. to decrease tone, but have not been shown to improve function. Nerve blocks and motor point blocks are a dying art that allow a cost effective decrease in focal hypertonicity. Agents used include temporary anesthetics for diagnostic purposes and alcohol or phenol for longer effects. Each of these interventions come with their own set of risks and benefits.

Not every spastic muscle needs an intervention. Spasticity that is helpful to some degree, rather than detrimental, may be observed over time. Ankle clonus, which is another positive sign of the UMNS, may be present on exam but may not manifest during gait. Alternatively, it may be contributing to a loss of ankle range of motion, poor orthotic fit or be set off as someone walks longer distances, interfering with endurance and balance. Spasticity may also be interfering with the development of more function. It causes biomechanical influences across multiple joints, with implications for the ongoing evolution of movement, range and comfort.

There is a time and place for the prescription of associated therapies in conjunction with the medical interventions. This should be discussed and addressed when problem solving through the plan of care. When someone is first assessed for neurotoxin injections, there might be discussion about what types of therapy have been tried before, what would be funded and for how long, where in the chain of therapy goals, that therapy is being directed. Has your patient had and performed a home exercise program (HEP) and is it still valid? No one gets therapy for life, even if there are goals. Goals at some point, do move to a more self directed, than medical setting. It should not be overlooked that we all change and so can our patients’ needs and potential. Timing for future interventions must be monitored. Spasticity can change over the course of a lifetime, for better or for worse. The time for interventions is not just at the initial onset of injury.

Many patients will be managed with a combination of ITB and botulinum toxin injections. While there is a tendency to use botulinum neurotoxin more in the upper extremity and ITB therapy more for the lower extremity, toxin injections may be appropriate for fine-tuning lower limb focal dystonias. For example, if tone is well managed but there is equinovarus posturing at the ankle, interfering with ankle stability, injections into the posterior and at times, anterior tibialis, may make the ankle more stable and prevent ongoing injury. Conversely, ITB therapy does have variable effects on the upper limb, as well.

There are times when botulinum neurotoxin is all that is needed for lower limb management. This could be in someone who is extremely ambulatory but has a focal need, or someone who is dependent and needs to be able to tolerate positioning devices. When there are limitations to how much botulinum toxin a person can receive, again, the goals of treatment must be prioritized.

There is a place for consideration of surgical interventions as well. Casting and injections may not be an adequate plan in the longterm. There is a point when it must be acknowledged that even with weight bearing, casting, splinting, etc. the gains are inadequate. Some patients will be better served by a definitive orthopedic intervention. Casting, neurotoxins and ITB, may have served to preserve or gain range of skin, blood vessels, nerves, muscles and tendons, so they are not a waste. Tone needs to be well controlled in conjunction with orthopedic interventions. Tendon Achilles Lengthenings (TALs) and Split Anterior Tendon Transfers (SPLATT) are amongst the most commonly performed lower extremity surgeries in this scenario. Procedures for wrist and finger flexors are also common in the upper extremity. Some orthopedic surgeons will mobilize joints under anesthesia, particularly the hip, knee and shoulder. Orthopedic surgeries do not mean that there will no longer be a potential need for toxin injections. In fact, it may mean that injections can be redirected to other muscles for a greater response. It is not unusual to combine all potential interventions in the treatment plan. Determining the goals of treatment with the patient and caregivers, in conjunction with the treating therapy team and prioritizing the goals of intervention, will lead to a more attainable outcome.

The Team Approach: It takes a village

The team approach to management of the UMN syndrome means having a true "team;" a group of professionals who can understand potential, interventions, speak a similar "language," and understand their role in their patients’ progress. If the treating team does not share a common vision, the patient will not benefit as they should. We all bring different information to the treatment plan. The best management comes out of the synthesis of that information. From the inpatient setting to the community and home, whatever the therapy, the philosophy of care should be consistent. Whether it is the nursing staff or family members, there should be repetition of the approach to transfers, weight bearing, whatever the task, to allow learning to be reinforced, with an eye on what is realistic and where that patient will be going in the future. Nonetheless, coordination of information and data, attention to detail and an appreciation of each discipline’s role in the plan of care, are imperative for a better outcome.

Funding considerations

In the current healthcare environment cost of care must be weighed. However, it is weighed against things that are often intangible: cost of not treating, quality of life, caregiver burden, loss of potential. Provision of occupational, physical and speech therapy in different settings, in conjunction with botulinum toxins, ITB pumps, orthopedic interventions, have an affect on our interventions. If a patient has a 2 week inpatient stay in the hospital, goals may be based more towards the caregiver, than in a patient with a longer length of stay, with more active function as a goal. It remains a challenge to advocate for services for a patient population that is sometimes overlooked. Contracts, plans, policies, peer to peers and politics have the potential to limit access to what might be an otherwise reasonable investment in someone’s future.

Food and Drug Administration (FDA) and evidence based medicine

In the United States, a medication that is approved by the FDA can currently be used as deemed appropriate by the treating physician. Many of the medications that are used in brain injury rehabilitation are prescribed in a manner different from the FDA labeling. Within reason, it should be remembered that what goes into the labeling derives from a very controlled, selected body of studies, that do not necessarily reflect the realities and the art of the practice of medicine. Examples that come to mind, are suggested dosing and indications for botulinum toxins, that do not fit with how medicine is practiced and what is accepted standard of care. Additionally, FDA labeling suggests that ITB therapy in cerebral origin spasticity be reserved for one year after injury. However, this advice ignores the moral imperative to treat patients rather than watch patients lose range, continue storming, have pain and miss out on a valuable rehabilitation window when there is an intervention that is helpful.

In summary, brain injury is not a static illness. It is a chronic consideration. If we do not give our patients the opportunity and benefit of the doubt to improve, they will not. If we, as medical professionals see their potential and allow patients the opportunity to access that potential they may, more often than not, make meaningful gains, surprise themselves, and us. Rehabilitation professionals in general, should avoid the tendency to be judgmental and close minded when considering the possibilities. While the patient and family have responsibility in the outcome from any of our interventions, we should consider the full picture of the care needed, what is realistic to perform, expect and the psychosocial factors involved. Would good enough be good enough for you?

Suggested Reading

• Simpson DM, et al. Assessment: Botulinum neurotoxin for the treatment of spasiticity (an evidence-based review.) Neurology 2008;70:1691-1698.
• Simpson DM, et al. J Neurol Neurosurg Physchiatry 2009;80:380-385.
• Ivanhoe CB, Francisco GE, McGuire JR, et al. Intrathecal baclofen management for poststroke spastic hypertonia: Implications for function and quality of life. Archives Phys Med Rehabil. 2006:87:1509-1515.
• Sheean G, Lannin NA, Turner-Stokes L, Rawicki B, Snow BJ. Botulinum toxin assessment, intervention and after-care for upper limb hypertonicity in adults: international consensus statement. Eur J Neurol.2010; suppl2:74-98.
• Elovic EP, Esquenazi A, Alter KE, Lin JL, et al. Chemodenervation and nerve blocks in the diagnosis and management of spasticity and muscle overactivity. PMR 2009; 1(9):842-851.