A severe traumatic brain injury (TBI) affects more than just the injured person. It also affects family members and friends who love and are close to the person who is injured. As one of these people, you play a very important role in caring for a loved one with a severe TBI. For many, this role is new and comes with a lot of questions.
What is severe TBI?
TBI occurs when an outside force disrupts the brain’s normal function. Falls, car crashes, assaults, and a blow or strike to the head are the most common causes of TBI. Severe TBI always includes a period of unconsciousness (uhn-KON-shuh s-nis). During this time, the person will not be able to stay awake. He or she will not be able to interact with surroundings in a purposeful way, such as reaching for an object. Here are the levels of impaired consciousness often seen in people with a severe TBI are the following:
A coma is a state of complete unconsciousness. People in this state can’t be awakened. They can’t see because their eyes are closed, and they may not respond to sound, touch, or pain. They can’t communicate, follow commands, show emotions, or engage in purposeful behaviors.
People in a vegetative state are still unconscious but may be awake at times. They may start to open their eyes. This is also known as “Unresponsive Wakefulness Syndrome.” They may react briefly to sounds, sights, or touch and may even cry, smile, or make facial expressions. But these responses are reflexes and are not under the person’s control. As with a coma, people in a vegetative state can’t show emotions or engage in purposeful behaviors. People in a vegetative state aren’t aware of themselves or their surroundings. They can’t communicate or follow commands. The word vegetative doesn’t mean the person is a “vegetable.” It refers to the “vegetative” or automatic functions still being controlled by the brain, such as breathing, heart function, and digestion.
People in a minimally conscious state begin to regain consciousness. They may have some awareness of themselves or their surroundings but not all the time. People in a minimally conscious state may engage in purposeful behaviors from time to time. For example, they may follow a simple command, look at people or objects around them, or keep their eyes focused on people or objects that are moving. They may reach for or try to use a common object, like a hairbrush. They may show appropriate emotional responses or try to communicate through gestures or talking.
Emerged from the minimally conscious state refers to people who can communicate consistently or use at least two objects in a purposeful way. During this stage, they may be able to answer simple questions correctly by saying or gesturing responses like “yes” and “no.” They may also be able to follow instructions and perform simple tasks.
When people regain consciousness, they may enter a post-traumatic confusional state. This state of recovery may include a condition known as post-traumatic amnesia (am-NEE-zhuh). People in this state are confused and have problems forming new memories. They may not be able to walk or talk, recall memories, or recognize people they know. Typically, people can’t remember where they are or what happened. They can’t remember day-to-day details or events. They can’t perform lengthy tasks. They may sleep a lot during the day but find it hard to sleep at night. They may be restless and/or agitated. People in this state may also do unsafe things, like pull on feeding and breathing tubes or try to get up without help.
What happens during the acute hospital stay?
Each TBI is unique. Most people with a TBI need a combination of intensive medical treatments. These may include neurological, surgical, and rehabilitative treatment. In the acute care setting, doctors and other healthcare professionals first address life-threatening injuries. Next, they address and treat other injuries and medical problems that arise. Finally, doctors make sure the injured person is medically stable. Many other health care providers and specialists may be involved too.
This can be overwhelming. The following is an overview of the health care team members who will likely be involved. Aside from providing care, the members of this team are an important source of information and support to family members and friends during this difficult time:
General medical team: This team of doctors, nurses, and nursing assistants provide care daily to people with TBI. This team treats medical conditions and manages medicines.
Intensive care specialists: One or more medical professionals who specialize in trauma care and recovery may be a part of the health care team:
- Surgeons – Depending on the injuries, surgeons may be a part of the team. Examples include trauma surgeons, neurosurgeons, orthopedic surgeons, and plastic surgeons.
- Critical care doctors – These medical doctors treat people who require intensive care. They monitor a person’s medical condition closely. They also help diagnose and treat medical problems.
- Critical care nurses – These nurse specialists do frequent (in some cases hourly) rounds. They perform informal bedside neurological exams. They may also help doctors perform procedures. Because they interact frequently with the patient and family, they are often the “first line” of communication, education, and support for families.
- Neurologists – These medical doctors evaluate and treat disorders of the brain. They may perform tests to help determine the extent of a brain injury. They may also perform bedside evaluations to guide diagnosis and monitor neurological recovery.
- Pulmonologists or respiratory (RES-per-uh-tohr-ee) therapists) – These specialists diagnose and treat breathing problems. They determine whether a person needs a breathing tube or machine to help them breathe.
- Dieticians or nutritional specialists – These professionals monitor a person’s nutritional status and manage their dietary needs. They may also help determine whether a feeding tube is needed to provide nutrition.
Pharmacists: In a hospital setting, these specialists work closely with the doctors to monitor a person’s medications. They help with medication dosing and prepare medications. They may also provide education to the medical team and sometimes directly to families. They can explain the purpose of the medications being given and provide information on medication side effects.
Physiatrists (fiz-ee-A-trists OR fi-ZAHY-uh-trists): These doctors help diagnose and treat medical conditions—including pain, muscle, joint, and nerve problems—during the rehabilitation (rehab) process. They also direct and oversee a team of brain injury rehab specialists, including physical therapists, occupational therapists, and/or speech therapists.
Rehab therapists: These specialists provide various types of therapies, for example, physical, occupational, or speech-language. People with TBI may receive these rehab services while they are in the intensive- or acute care unit. These services help prevent muscle loss and keep the range of motion in arms and legs. They can also help with swallowing, feeding, and communication difficulties.
Neuropsychologists: These psychologists evaluate and diagnose changes in behavior, thinking, and emotion caused by TBI. They may perform bedside assessments to help diagnose levels of consciousness. They may educate and support family members of people with TBI.
Case managers and social workers: These providers coordinate the health care plan by handling insurance benefits and other financial matters as well as overseeing discharge planning. They are a valuable resource for families and can provide both emotional support and information about TBI. These providers can also plan for future phases of care.
Other professionals: A psychologist, chaplain, and/or patient representative may be available to provide spiritual and emotional support to people with TBI and their family members.
Throughout the recovery process, people with TBI undergo tests and procedures to assess the location and level of brain damage. This will help with diagnosis, prognosis, and treatment decisions. Such tests and procedures may include the following:
Neuroimaging studies: These tests use computed tomography (tuh-MOG-ruh-fee) (CT scans) or magnetic resonance imaging (MRI). They help identify bleeding and injured parts of the brain. Doctors can also use the results of these tests to help determine if surgery is needed.
Electroencephalograms (ih-lek-troh-en-SEF-uh-loh-gram) (EEGs): These tests measure electrical activity in the brain. Results of EEGs can be used to diagnose seizures. They can also show the location and extent of a brain injury.
Neurological monitoring/neuromonitoring: Devices such as intracranial pressure monitors track the amount of pressure in the brain and help manage brain swelling. These devices require placing a tube in the brain that is attached to wires and a monitoring screen. If needed, the tube device can be used to drain excess fluid and relieve excess pressure in the brain. Neuromonitoring also helps diagnose and treat hydrocephalus (an excess of fluid buildup in the brain) and can help determine if surgical placement of a more permanent pressure valve, called a shunt, is needed.
Informal bedside neurological exams and formal behavior assessment scales: Doctors may use these tests to diagnose a disorder of consciousness caused by a TBI. They can help determine a person’s level of impaired consciousness. A typical exam tests basic reflexes; doctors look at how the eyes react to light and they assess a person’s response to sound, voice, touch, and pain. Doctors also look for signs of purposeful behaviors, like following a moving object with the eyes. This is called visual tracking. Other signs doctors look for are following commands and communicating.
What is known about recovery of consciousness and outcomes after a severe TBI?
Some doctors consider certain severe TBIs to be beyond hope. However, this can’t be determined in the first few days after an injury. It may take weeks—or even months—for a doctor to determine how or if a person will recover over time. Many people (but not all with a disorder of consciousness related to a TBI) will eventually regain consciousness. The following are some important facts to keep in mind about recovery from a disorder of consciousness caused by a severe TBI.
Recovery usually follows a step-by-step path. Most people progress through the stages of coma, vegetative state, minimally conscious state, emerged from minimally conscious state, and post-traumatic confusional state. Then, people often continue to improve slowly over time.
There is a lot of variation in how people move through these stages and how long each stage lasts. Not everyone goes through every stage. Some people move through the stages quickly or skip stages. Others may get stuck in a stage.
Recovering from a severe TBI can take a long time. Some people regain consciousness within a few days or weeks and recover quickly. Others progress more slowly and may remain in a state of impaired consciousness for months or years. Every injury is different and follows its own timeline.
As a general rule, the longer a person remains in a coma or in a state of impaired consciousness, the more likely it is that they will be severely disabled.
Visual tracking is a sign of improvement. It is often one of the first meaningful behaviors seen when a person moves from a coma or vegetative state to a minimally conscious state.
The earlier a person improves from a coma or vegetative state to the minimally conscious state, the better the long-term outcome. For example, if a person can follow simple, one-step commands by 2–3 months after the injury, the better the outcome is likely to be. This is true even if the responses are delayed or inconsistent.
People with disorders of consciousness that last for several months after a severe TBI can still improve. They may benefit from specialized TBI rehab.
Age also plays a role in recovery outcomes. Among those with a prolonged time of impaired consciousness, younger people are more likely to return to living more independent, productive lives.
An accurate diagnosis about level of consciousness is essential. It helps predict short- and long-term outcomes. It can help when deciding if specialized rehabilitation is needed. An accurate diagnosis is also helpful for family members and decision makers as they sort through difficult decisions like whether to stop care.
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