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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:
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:
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:
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.
What can I do to help?You may feel powerless, helpless, and afraid. But you play an essential role in the care of your loved one. You can do many things to move treatment along and support ongoing recovery:
Here are some suggestions on how to interact with a loved one with a severe TBI:
What should I ask the doctors and other health professionals who are treating my loved one?
You or other decision makers may have to make decisions about treatment in the first hours and days after the injury. These decisions may need to be made based on unclear information. This can be scary and overwhelming. You may feel more confident when a disorder-of-consciousness diagnosis is based on both bedside exams and objective tests (e.g., results of an EEG). Doctors may deliver a poor prognosis “with certainty.” Ask questions about what this means. Often, more specialized bedside exams, tests, and time are needed. This is especially important when deciding whether to remove your loved one from life support. If a definite poor prognosis is given, ask the health care team to give you the full range of possible outcomes, and ask what data they are basing the prognosis on. You may also want to consult a disability specialist with expertise and experience in TBI rehab. Consider what they say along with information from the health care team. These specialists can offer an expert opinion about your loved one’s diagnosis and prognosis. They can also help match your loved one with the right rehab services.
Factors other than the main injury may make it tough for your loved one to interact with his or her surroundings. For example, medicines may make him or her sleepy. He or she may be having seizures. There could also be an infection or a build-up of fluid on the brain. Ask the doctors to look for these and other factors that can affect recovery.
When your loved one is medically stable, treatment will focus on preparing him or her for the next level of care. At this point in the recovery process, many people still need specialized, inpatient services including rehab. Specialized rehab services are offered in many settings. These include acute care or inpatient rehab hospitals or subacute rehab facilities. However, many health insurance plans won’t pay for these services if your loved one can’t actively engage with surroundings. Your loved one could also receive care at a skilled nursing facility, but specialized TBI services are often limited in that type of setting. To decide on the next level of care, doctors will look at your loved one’s medical status and diagnosis and at brain injury programs in your area. The search for the right placement and services can be difficult. Social workers and/or case managers can help you explore the available options. Additional information and resources to help find the right placement for your loved one may also be available through your local, state, and national brain injury associations. Whatever the next level of care is, you should look for a program with experience in caring for people with severe TBI. If your loved one is in a vegetative or minimally conscious state, look for facilities with experience in caring for patients with disorders of consciousness. Here, your loved one will get care and be observed for a longer period of time. This can help reach an accurate prognosis and guide long-term care planning. Such settings are also best prepared to monitor progress, prevent complications from developing, and help with a discharge home when appropriate. If your loved one doesn’t get placed in a facility with specialized TBI services, you may want to stay in touch with a neurologist, rehab medicine physician, and/or a rehab case manager so someone with TBI expertise remains involved in the care of your loved one.
Especially in the early phases of recovery, your loved one’s condition may change quickly and often. You may feel as if you are in a constant state of worry about his or her medical stability. This can be extremely stressful for families. It may help to stay informed about your loved one’s daily status and the progress that the care team is observing. Ask questions to help you better understand his or her care needs, what is being done to manage his or her condition, and what the next days and weeks might look like based on the care team’s observations. Information, education, and regular communication with the care team may reduce your stress level and help you feel actively involved in your loved one’s care. Summary of key points about severe TBI
Where can I learn more about severe TBI and DOCs?
ReferencesGiacino, J. T., Zasler, N. D. M., Katz, D. I., Kelly, J. P., Rosenberg, J. H., & Filley, C. M. (1997). Development of practice guidelines for assessment and management of the vegetative and minimally conscious states. Journal of Head Trauma Rehabilitation, 12(4), 79–89. Katz, D. I., Polyak, M., Coughlan, D., Nichols, M., & Roche, A. (2009). Natural history of recovery from brain injury after prolonged disorders of consciousness: Outcome of patients admitted to inpatient rehabilitation with 1–4 year follow-up. Progress in Brain Research, 177, 73–88. Leonardi M., Giovannetti M., Pagani M., Raggi, A., & Sattin D. (2012). Burden and needs of 487 caregivers of patients in vegetative state and in minimally conscious state: Results from a national study. Brain Injury,26(10),1201–1210. Nakase-Richardson, R., Whyte, J., Giacino, J. T., Pavawalla, S., Barnett, S. D., Yablon, S. A., . . . Walker, W. C. (2012). Longitudinal outcome of patients with disordered consciousness in the NIDRR TBI Model Systems Programs. Journal of Neurotrauma, 29(1), 59–65. Pagani, M., Giovannetti, A. M., Covelli, V., Sattin, D., & Leonardi, M. (2014). Caregiving for patients in vegetative and minimally conscious states: Perceived burden as a mediator in caregivers’ expression of needs and symptoms of depression and anxiety. Journal of Clinical Psychology in Medical Settings, 21, 214–222. Whyte, J., Nakase-Richardson, R., Hammond, F. M., McNamee, S., Giacino, J. T., Kalmar, K., . . . Horn, L. J. (2013). Functional outcomes in traumatic disorders of consciousness: 5-year outcomes from the National Institute on Disability and Rehabilitation Research Traumatic Brain Injury Model Systems. Archives of Physical Medicine and Rehabilitation, 94(10), 1855–1860. AuthorshipSevere Traumatic Brain Injury: What to Expect in the Trauma Center, Hospital, and Beyond was developed by Amy M. Rosenbaum, PhD; Alan Weintraub, MD; Ron Seel, PhD; John Whyte, MD, PhD; and Risa Nakase-Richardson, PhD, in collaboration with the Model Systems Knowledge Translation Center. Source: Our health information content is based on research evidence and/or professional consensus and has been reviewed and approved by an editorial team of experts from the Traumatic Brain Injury Model Systems. Disclaimer: This information is not meant to replace the advice of a medical professional. You should consult your health care provider regarding specific medical concerns or treatment. The contents of this fact sheet were developed under a grant from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR grant number 90DP0082). The contents of this fact sheet do not necessarily represent the policy of the U.S. Department of Health and Human Services, and you should not assume endorsement by the federal government. Copyright © 2017: Model Systems Knowledge Translation Center (MSKTC). May be reproduced and distributed freely with appropriate attribution. Prior permission must be obtained for inclusion in fee-based materials. |