What Is the Course of Treatment Post-TBI?
What is the course of treatment for those with mild TBI?
A distinction must be made between those who experience relatively mild injuries, never being admitted to a hospital, and those with more serious injuries. In the case of the former, optimal treatment requires their being followed by a treatment center. However, this type of follow-up is rare, as most emergency rooms or other centers of medical care are not equipped to provide this service.
Follow-up is necessary for two reasons: to provide information about mild head injury and its possible consequences, particularly as the individual may have been unable to process such information at the time of injury, and to determine if further treatment is needed. When difficulties are found, referral to outpatient treatment is the second component of optimal care for those with mild injuries. Outpatient services are discussed in the next question.
What is the course of treatment for those with moderate/severe TBI?
A careful distinction must be made between optimal systems of care and what may be available to a specific injured person at a specific time and in a specific place. It is only in recent years that adequate facilities and services have grown to meet the need of some individuals with TBI, and, therefore, optimal care is a relatively new concept, but one that is not available everywhere.
Two systems of care are needed: At the front end of care, components such as emergency medical services (which convey the injured person to a medical center), emergency room care, trauma care, and acute medical care are needed. At the back end of care, a variety of components are required to respond to the needs of individuals in coma (short-term and long-term) and of those who emerge from coma (inpatient care and return to the community).
The New York State Department of Health (DOH) has developed a system of care for individuals who experience moderate to severe TBI within New York, which includes five components: inpatient rehabilitation programs, coma recovery programs, extended care programs, outpatient programs, and community support services.
Once the injured person has emerged from coma and is medically stable, he or she is transferred to an inpatient rehabilitation program. These programs may be provided within hospitals or nursing homes and are designed for patients who can benefit from three or more hours of restorative therapy per day. Such therapies may include physical therapy, occupational therapy, speech therapy, cognitive retraining, vocational services, and the like.
When the individual with TBI has been medically stabilized but is not yet alert (still at Rancho Level I-III), he/she is transferred to a coma recovery program, which may be closely linked with or a part of an inpatient rehabilitation facility. These programs are designed to meet the special needs of persons in coma. It is expected that approximately half of these patients reawaken to the point where they can then benefit from inpatient rehabilitation; the other half, who remain in coma or who cannot benefit from at least three hours of inpatient therapy, are transferred to extended care programs.
Extended care programs offer special services for injured individuals who need supportive care and therapies less intensive than offered in inpatient rehabilitation programs. These individuals have very diverse needs, but typically need both therapy and nursing services to optimize their level of functioning and comfort. These services are typically offered in nursing homes.
Outpatient programs respond to the needs of individuals after discharge from inpatient rehabilitation and also for those with TBI who have never been hospitalized, but have a recognized need for therapy. Within outpatient services, many options should be available: day programs, the same therapies as offered within the inpatient program, and coordination of treatment components.
Community Support Services: A variety of needs confront the individual with TBI after discharge from inpatient services: safe housing, medical care, financial support, and transportation. He/she may want to explore vocational options, seek leisure time activities, attend support groups, and/or engage in social activities. Ongoing access to support and information is essential — it provides the safety net needed post TBI. Appropriate services, clearly, are not available in all communities. State Brain Injury Associations may help you find what is available in your region. Information about these groups is available on the Web site of the Brain Injury Association of America (www.biausa.org).
The Brain Injury Research Center of Mount Sinai is conducting research on treatment programs to help people with TBI who experience cognitive and emotional problems, as well as fatigue. A description of these studies is found at Rehabilitation Trials.
What should be accomplished through treatment programs?
Every individual with TBI is different, and programs vary greatly in their goals for people they are serving. What is important to remember is that each program should be shaping its services to fit individual needs and not vice versa — shaping the individual to fit the services it has to offer. Each program should be offering hope and support for the injured individual's maximizing his/her functioning.
What sort of return of function is likely? Again, this will vary with each individual and with the choice of services available to him/her. What is very clear, however, is that when an appropriate range of services has been used, a variety of compensatory strategies and environmental changes should result — to help the injured individual function as fully as possible. This can happen only when programs define the need as one of working toward the goals defined by the individual with TBI. They empower the individual and nurture his/her growth and responsibility for self. This also results only when the solution is seen as residing in both the individual who has been injured and in the social and physical environment.
For many individuals with TBI, recovery is fully possible in many important aspects of what might at first seemed lost forever due to injury. The injured individual can recover his/her sense of self and self-respect. Hope and a positive vision of the future can be recovered. A sense of growth and accomplishment and contribution to life can be recovered. A network of supportive social supports can be recovered. Purposeful activity can be incorporated once again into life.
What may not be recovered for many is all of the individual's pre-injury functions at their pre-injury levels, nor all of the goals and hopes once held. For some people who experience TBI, this is a loss that leads to chronic upset and depression. But for many others, the loss becomes an accepted part of the stream of life and they move on to claim new hopes and new satisfactions. For maximal recovery, several factors are essential to the individual with TBI:
- The person with TBI must have social supports: to encourage him/her, to help gain access to available resources and to build bridges to wider community networks.
- The individual with TBI must gain access to a service network that is able to address the person's individual needs and teach the skills needed to compensate for losses and to define and achieve his/her goals.
- The person with TBI must have access to accurate information, responsive to needs that vary over time.
- The person with TBI must be able to draw upon inner resources and values.
This is a lifelong process, not a one- or two-step course of action. The challenge is tremendous, but many succeed in staying with the challenge to help themselves and their loved ones. The key is finding resources outside the self to bolster resources within.