Traumatic Brain Injury — The Game of Rehab
Winning teams of physicians, nurses, social workers, PTs, OTs, and others help patients with traumatic brain injury and their families become MVPs.
The brain is the governing agent for every thought, movement, and interaction with the world. When it is injured through a fall, an assault, or any other blow to the head, the essence of who we are can be changed forever. The extent of damage from a traumatic brain injury (TBI) can range from a mild concussion to a permanent loss of consciousness. One patient may resume usual activity within days, while another requires total care for the remainder of his or her life. The degree of severity and resulting impairment depend on the type of injury, the location of the damage, and premorbid factors such as age and overall brain health.
For most people who have this type of injury, the recovery is long and complex. Immediately following an injury, patients are sent to acute care, where they are treated emergently. Once stabilized, they are transferred to acute medial rehabilitation. Unlike broken bones that can be cast while they heal, no cast exists for a “broken brain.” The structure, supervision, and routine of rehab serve as the safety net patients need during this most vulnerable phase of recovery. The stage is seen as vulnerable because patients are in a state of confusion, cannot control their movements, and have little if any awareness of their deficits, yet are being pushed to regain as much independence as possible. The goal: get the patient home and back into the game.
Each member of the team plays a vital role. Doctors give medical direction; nurses provide skilled care; physical, occupational, and speech therapists and neuropsychologists deliver treatment; and the psychosocial team provides guidance and stability to the patient, family, and team to keep the process moving forward. The psychosocial team is made of up the social worker and neuropsychologist and works closely with the rest of the team but is most involved at the family/caregiver level. Upon arrival, patients are confused, aphasic, underaroused, or possibly unresponsive. Because of these problems, our first task is to meet the family to get background information on the patient and review what can be expected from the team during the patient’s stay.
The first few days of the patient’s stay revolve around assessing his or her condition and helping the family feel comfortable in the new setting. The process entails adjusting a patient’s schedule and treatment goals and developing a clear communication system with the caregiver through direct conversation, phone calls, or e-mail. After the team assesses the patient’s status and expected rate of recovery, the psychosocial team informs the family of the estimated length of stay and poses the ominous question, “Who is going to be the caregiver for this patient?”
In response, we are often met with surprise, anger, or frustration. Responses vary day to day: “I’ll take care of him and will do it alone,” or “You expect me to take care of him? How do you expect me to do this?” The questions are delivered in tones of resentment and fear and take a great deal of patience, care, and perseverance to answer. The nurses and therapists are informed of the identified caregiver and set about their work of training, while the psychosocial team guides the family through the process and teaches them that no one response or feeling in the situation is right or wrong—it simply is.
To meet caregivers at their individual level of functioning, the psychosocial team tailors the manner in which it presents information. The focus of meetings is determined by their queries, as we provide facts about the injury and sequelae, problem solve, and ponder the prognosis. The meetings are conducted in an informal yet objective manner to diffuse feelings of denial or defense and create an opportunity for caregivers to apply information they believe is relevant to the patient. Ultimately, many families become experts in the patient’s care.
The next step in the game is to plan. Once the caregiver(s) has been identified, the psychosocial team will sort out details such as who will provide supervision, what safety precautions are needed in the home, and many other details. The questions are often asked because, as the patient evolves, so does the plan. Meeting regularly and planning early can offset the multiple stressors involved in the rehab process, such as dealing with insurance, Social Security disability, family leave, emotional adjustment, and overall exhaustion. Taking time to assist families with these tasks lessens their burden of trying to manage the quagmire of healthcare and ensures that essential tasks are completed.
Up to Bat
Once the training is complete, the patient and family are ready for discharge. However, as discharge nears, it is common to see an increase in caregiver demands and anxiety. Suddenly, reality has hit “This is a life-altering, unpredictable situation. I will be responsible for his care. I cannot control his deficits. He’s not ready to leave!”
There is no easy way to handle the problem and, in response, caregivers may direct their anger toward the psychosocial team. Regardless, the psychosocial team continues to meet with families and provides thorough written instructions; the patients’ aftercare is already coordinated for them, including outpatient therapy and alternative funding sources. Therapists also provide a summary of the patient’s treatment and safety recommendations, as well as suggestions for post discharge activities. When necessary, nurses will provide the caregiver with a nursing care plan. At a time when patients and families are under a great deal of stress and inundated with verbal instruction, the written information serves as a tool for future reference.
Although the system is designed to triage and meet the soldier’s medical needs, the results of mild head injuries such as concussions or postconcussive syndrome are often misunderstood, overlooked, and misdiagnosed. The challenge of the recovery process arises when soldiers return to duty too early or go untreated and are left vulnerable to an increased risk for error and reinjury. Consequently, those who return to the states for treatment may be victims of multiple head trauma. To address the ongoing rehab needs, patients are encouraged to attend the continuum of care, ranging all the way from acute rehab to community reentry. Soldiers can opt to attend a different facility that specializes in TBI and also provides the continuum of care. However, they will need their caregivers to advocate to attend a nonmilitary facility.
When working with soldiers on our unit, the protocol for social workers requires that we identify whether the patient is still on active duty or has transferred into “medical separation” (medically retired), as the status will dictate the amount, type, and timeliness of resources available to the patient throughout the rehab process.
Post Game: Continuum of Care
The push to remain involved in support activities is vital to the recovery process. While brain injury survivors may look and sound fine, common social exchanges, group settings, and similar situations can be difficult experiences due to impaired auditory comprehension, delayed cognitive processing, or other problems with communication skills. For others, basic cognitive faculties are in place, but self-awareness and self-esteem are low. Connecting with others can help patients and caregivers remain positive and hopeful as they move through the transitions of regaining their lives.
The Dugout: The Inspiration Behind Working With Head Trauma
The work draws on our own emotional resources and, at times, can be draining. But what stands true no matter what issues arise is that working with patients and families is always an honor. We, in all our imperfections, are appointed to guide these families through a pivotal stage of one of the most challenging situations they have yet to encounter. For some the involvement is minimal, but for others, it is mountainous and leaves an impression that can last a lifetime. Regardless of these differences, it is our job to make the rehab experience easier for the patient and caregiver and be a source of hope for all.
— Lorraine A. Lewis, MSW, LSW, works at the MossRehab Drucker Brain Injury Center in Philadelphia.