June 9 , 2008
A social worker describes how winning teams of physicians, nurses, 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 medical 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.
On our particular brain injury unit, the approach is comprehensive and team oriented, with therapists, nurses, and doctors in constant contact regarding patient care. The focus is on family education and support as well as teamwork, be it in the form of extended daily rounds, heavily used group voice mail, behavior rounds, or transdisciplinary data collection. Everything that happens with a patient is news to and for everyone. The reason for such constant communication is that every aspect matters since it affects the patient’s safety and recovery, as well as how the team adapts and delivers treatment.
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 gather the patient’s background information and review what can be expected from the team during the patient’s stay.
Entrance into acute medical rehabilitation can be a frightening experience. Many patients enter rehab after a long and complicated course in critical care. Some, in fact, had flatlined and were brought back to life. The state in which we find the patient and family is never the same, nor are their expectations, communication style, and ability to trust. To ensure a stable and supportive welcome, the psychosocial team informs the patient and family of what to expect during the rehab stay: three hours of daily therapy, family meetings, education, training, discharge recommendations, and an open line of communication.
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.
Once a caregiver is identified, he or she is directed to learn everything possible about the patient’s injury and care. The demand comes at a time when caregivers are feeling powerless, are under a great deal of duress, and are expected to manage additional responsibilities, including identifying the patient’s health and financial benefits and finding resources to fund future rehab. The first step in preparing caregivers is to discuss their concerns and educate them about the TBI recovery process. During this time, caregivers resort to survival mode. For some, it means functioning on autopilot. For others, it means positive thinking. For still others, it becomes a battle.
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
Finally, there is hands-on training. Families and friends need to learn how to provide the patient with appropriate care, including transfers, feeding, ambulating, bathing, and functioning in the community setting. Training involves observation and implementation. In many cases, the therapists and patient will do a home visit to assess the safety of the home environment and, in nearly all cases, the patient goes on a community outing with the therapist and caregiver to practice strategies for safety and appropriate social interactions.
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 that this is a life-altering, unpredictable situation.
The families are right—these patients are not ready to be discharged. Many are still in or are just emerging from post-traumatic amnesia and have mild to severe cognitive deficits. However, based on parameters determined by insurance plans, these patients are ready to leave as they no longer qualify for coverage for inpatient acute medical rehabilitation. This is where the process becomes murky for the patients and families. Eighty percent to 100% of the cost of an acute medical rehab stay is covered by insurance. Patients are appropriate for inpatient rehab based on the need for medical care, the need for three hours of intense rehab daily, and the ability to participate in and benefit from the therapy.
Recovery from brain injury is a long process as the biological healing of the brain can continue for months or even years. A stay in acute rehab can range anywhere from a few days to a few months. While the staff understands these parameters, the families that must deal with the aftermath of the injury often do not. Caregivers remind us that they pay their insurance premium, the patient is clearly still impaired, and ask “Why are you kicking him out? How can insurance do this to us? It isn’t fair!”
With the increased costs of healthcare and decreased amount of benefits, patient’s rehab stays have been significantly shorter, and families are left with the glaring injustice. Cognition takes a long time to heal, and there is simply not enough coverage for acute medical rehab allotted to this condition.
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.
While the number of TBIs are on the rise, soldiers from the Iraq and Afghanistan wars are also in great need of specialized treatment. The basic rules of rehab are the same—daily therapy, education, support—but the rules regarding resources are not. When a soldier is injured, he or she is immediately transported to an on-site field hospital providing trauma care. Those who are severely wounded are then transferred to a military hospital, such as Landstuhl Regional Medical Center in Germany. From there, the most serious cases are air evacuated to a U.S. military hospital.
Once soldiers are medically stabilized, they are transferred to one of four specialized polytrauma facilities located in Florida, California, Minnesota, and Virginia, all of which are affiliated with the Defense and Veterans Brain Injury Center. Soldiers also have the option of attending rehab at one of the civilian partner programs located in Charlottesville, Va., or Johnstown, Pa.
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.
Postgame: Continuum of Care
The continuum of care includes various levels of care that are available to patients, including skilled nursing facilities, home care, outpatient care, and community reentry. In addition to therapy, patients and families are encouraged to attend support groups, take part in extracurricular activities (such as adaptive rowing), write their congressional representatives to advocate for more health coverage for cognitive rehabilitation, and remain active in the pursuit of recovery.
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.
— Lorraine A. Lewis, MSW, LSW, works at the MossRehab Drucker Brain Injury Center in Philadelphia.
For more information about head injuries, please refer to your local brain injury association group at www.biausa.org.