GETTING A PROGNOSIS
A variety of outcomes are possible following a severe brain injury, everything from death to extremely good recovery. In the early stages following the injury, doctors may use the following tests to determine which outcome is likelier:
The person’s score on the Glasgow Coma Scale. A lower score indicates a worse outcome. Computed tomography (CT) scans or magnetic resonance imaging (MRI) of the brain can show the extent and type of brain damage. They can also reveal the presence or absence of other possible injuries caused by a lack of blood flow.
Measurements of pressure inside the skull. Elevated pressure is typically associated with a worse outcome.
The Glasgow Coma Scale
Best eye response (E)
3. To speech
2. To pain
1. No eye opening
Best verbal responsive (V)
3. Inappropriate words
2. Incpmprehenssible sounds
1. No verbal response
Best motor response (M)
6. Obeys commands
5. Responds purposefully to pain
4. Withdraws from pain
3. Flexes in response to pain
2. Extends in response to pain
1. No motor response
Doctors add the scores from all parts of the test. A patent with a total score of less than 8 is considered to be in a coma.
Measurements of the electrical activity of the brain, such as electroencephalograms (EEGs) may reveal the degree of damage.
Another important measurement is time: The longer a person stays in a coma or vegetative state, the worse the likely extent of the damage and, therefore, the worse the outcome.
Appropriate treatment should begin at the time of the accident or incident. A brain injury is an emergency. Emergency personnel should attend to the person with a brain injury as soon as possible.
After receiving emergency medical treatment, persons with a moderate to severe brain injury may be admitted to a hospital’s inpatient intensive care unit (ICU). The goals in the inpatient ICU include making the patient stable and preventing a medical crisis. Some preventive rehabilitation may be tried in the ICU, such as body positioning splinting and range of motion (a therapist moves the persons limbs).
The person with the brain injury in the ICU may be unconscious, in a coma or medically unstable. To provide life‑sustaining medical care, the health care staff may have many tubes, wires and pieces of medical equipment attached to the person with a brain injury.
MEDICAL EQUIPMENT USED IN THE ICU
Ventilator (aka respirator):
Machine that helps a person breathe. A person who has a brain injury may be unable to breathe on his or her own. To use a ventilator, a tube is placed through the person’s mouth to the breathing passage (aka trachea or windpipe). This procedure is called intubation. Intubation with the use of a ventilator allows a person to breathe and receive oxygen, which is necessary to live.
Intravenous (IV) lines:
Tubes placed in a person’s veins that deliver medications and fluids to their body.
Tubes placed in a person’s arteries that measure blood pressure.
Used to collect and monitor a person’s urine. A person who has a brain injury may be unable to control his/her bladder. A rubber tube is put into a person’s bladder. This allows urine to move from the bladder, through the tube, and to a container at the end of the tube.
Nasogastric (NG) tube:
Used to deliver medication and nutrients directly to a person’s stomach. A tube is placed through a person’s nose or mouth and run through the swallowing passage to the stomach.
Machine that monitors a person’s heart. Wires with sticky ends are placed on the body.
lntracranial pressure (ICP) monitor:
Device attached to a person’s head with a monitor that indicates the amount of pressure in the brain. When the brain is injured, it may swell. When the brain swells, the brain has no place to expand. This can increase the pressure within the skull. If the brain swells and has no place to expand, this can cause brain tissues to press together, causing further injury.
Small clamp-like device placed on a person’s finger, toe or earlobe. The pulse oximeter measures the amount of oxygen in the blood stream.
TIPS FOR FAMILIES AND CAREGIVERS
You may find it emotionally devastating when visitation restrictions do not allow you to always be by your loved one’s side. But limiting visitation lets the staff carry out many necessary procedures. As patients stabilize, they are usually moved to a normal patient room where visitation rules are more relaxed.
Family members gathered in a waiting room or the patient’s room can put their time to good use by deciding who is the most available for daily updates from the medical and nursing staff. Start a notebook for this information; collect business cards from the physicians treating your family member; and record questions. This information can be passed along to other family members and friends.
LATER DAYS IN THE HOSPITAL
Once the individual is stable, the focus of treatment may be rehabilitation.
Trauma physicians will no longer be involved in the care of the patient as he/she gets better. Some of the patient’s mannerisms and characteristics will begin to reemerge and therapists will evaluate and work on those functions lost to the injury.
Some individuals become agitated during this time. This can be very frightening for family members, but agitation in this early period is actually a positive sign that the brain is beginning to recover. Also, do not be discouraged if physical recovery seems to be happening faster than intellectual recovery.
Setbacks will become less frequent as your family settles into a routine of visitation and hopefulness. Be prepared to speak with hospital social workers, insurance case managers, rehabilitation evaluators and representatives from state agencies or trust funds about benefits and payment of claims, eligibility for state-provided programs, legal issues and discharge options. Be sure to write important information down when discussing issues with professionals. It can help you accurately share information with others later.
Following hospitalization and rehabilitation, some patients with brain injuries will be discharged into specialized rehabilitation programs to continue recovering. Others who have recovered more fully may be referred to transitional programs to improve their thought processes and job skills before returning to the community.
Still, others may return to the community without follow‑up services. The discharge options can be affected by insurance benefits, availability of programs or choices the family makes as to the best next steps for the person with a brain injury.
When a person with a brain injury comes home, there can be changes in cognition and behaviors that can cause a significant amount of stress for family members or caregivers. Even with daily involvement with a rehabilitation program, the person with a brain injury can be difficult to manage in the home. There can be a range of issues that can add stress to the family: agitation and irritation toward family members, lack of awareness of deficits from brain injury, trouble with initiating or completing basic tasks, etc.
Some simple things families can do for the person with a brain injury:
- Create a schedule.
- Break tasks down into simple steps.
- Write things down.
- Find a support group to help connect with others who are experiencing or have experienced similar issues.
During this stage medical issues are usually no longer the main concern. More emphasis is placed on cognition (the way a person interacts with his/her environment). The goals are to build skills and prepare for the future. Whether that means returning to school, work, the family home, a care facility or another setting, the aim is to help the individual enjoy the highest possible quality of life.
A neuropsychologist will usually do an assessment at this point to evaluate what abilities the individual with a brain injury has and what new problems he/she has now developed. This evaluation helps the patient and the family better understand how the injury has affected intellectual functioning, and provides information about how to deal with the problems. It indicates the kinds of support the family member will need. It is important that the professional present this information to the person with a brain injury and explain the results of the assessment to his/her whole family. This information is the basis for treatment and future plans.
Rehabilitation programs should be individualized, catering to each person’s unique needs. Just as no two people are exactly alike, no two brain injuries are exactly alike. The person with a brain injury and his or her family should always be the most important members of the treatment team. Cultural, religious, social and economic backgrounds must always be considered when planning a person’s rehabilitation program.
The goal of rehabilitation is to help people become as independent as possible. Rehabilitation channels the body’s natural healing abilities and the brain’s relearning processes so an individual may recover as quickly as possible. Rehabilitation also involves learning new ways to make up for abilities that have changed due to the brain injury.
This section describes the different types of hospital and rehabilitation programs, health care professionals, and tests and scales used in the recovery process.
ACUTE REHABILITATION UNIT
When patients are medically stable and have reached a point in recovery where they are able to participate in therapy they may be transferred to an inpatient acute rehabilitation setting. In the acute rehab setting, a team of health professionals works with the person and their family. The goal of acute rehabilitation is to help people with brain injuries achieve their highest level of independent life skills. Activities of daily living include dressing, eating, toileting, walking, speaking, and several other basic, but important, activities that we perform in our daily lives.
Rehabilitation requires the expertise of the several health care professionals and acute rehab team members.
ACUTE REHAB TEAM MEMBERS
Doctor of physical medicine rehabilitation. The physiatrist typically serves as the leader for the rehabilitation treatment team and makes referrals to the various therapies and medical specialists needed.
Evaluates and treats a person’s ability to move the body. The physical therapist focuses on improving physical function by addressing muscle strength, flexibility, endurance, balance and coordination.
Helps the patient prevent, reduce or overcome physical and emotional challenges by using regular activities to ensure the highest level of independent functioning in daily living. Areas addressed by occupational therapists include: feeding; swallowing; grooming; bathing; dressing; toileting; mobilizing the body on and off the toilet, bed, chair, bathtub; thinking skills; vision; driving; homemaking; money management; fine motor skills; (movement of small body muscles, such as in the hands); and wheelchair positioning and mobility.
Evaluates a person’s ability to express oneself (speech, written) and understand what is seen or heard. He or she focuses on the muscles in the face, mouth and throat. They also address swallowing issues.
Monitors all body systems. A rehabilitation nurse tries to keep the person’s medical status, take care of any complications, and work on goals to restore a person’s functioning.
Case manager/social worker:
Makes sure the patient gets appropriate and affordable treatment, and that their discharge from the hospital is easy. Maintains regular contact with the patient’s insurance carrier, family and referring physician to make sure that treatment goals are understood and reached
Provides activities to improve self-esteem, social skill s, motor skills, coordination, strength, cognitive skills and leisure skills. Recreational therapists plan outings to allow the person to use the skills he/she has learned in the community.
Focuses on thinking skills, behavior and emotions. Neuropsychologists help the person return to a full, productive life.
Subacute rehabilitation provides services for persons with brain injury who need a less intensive level of rehabilitation over a longer period of time. Subacute rehabilitation is often provided in a skilled nursing facility or nursing home.
DAY TREATMENT (DAY REHAB OR DAY HOSPITAL)
Day treatment provides rehabilitation in a group or individual setting during the day and allows the person with a brain injury to return home at night.
Following acute/subacute rehabilitation, a person with a brain injury may continue to receive outpatient therapies. A person with a brain injury who was not severe enough to require inpatient hospitalization may attend outpatient therapies to address his/her issues.
HOME HEALTH SERVICES
Some hospitals and rehabilitation companies provide rehabilitation therapies within the home for persons with brain injury.
Community re-entry programs focus on developing higher-level motor, social and cognitive skills to prepare the person with a brain injury to become more independent.
Treatment may focus on safety in the community, interacting with others and money-management skills.
Vocational evaluation and training may also be a part of this type of program.
Persons who participate in the program usually live at home.
INDEPENDENT LIVING PROGRAMS
Independent living programs provide housing for persons with brain injury, with the goal of helping them regain the ability to live as independently as possible. Usually, independent living programs will have several different levels for people requiring more assistance and therapies, and also for those who are living independently and being monitored.
BRAIN INJURY SUPPORT GROUPS
Brain Injury support groups can help individuals with brain injury and their loved ones cope and increase their knowledge about brain injury issues. Support group members can provide valuable emotional support because of their experiences and understanding of the impact of brain injury. Support group types, locations and times can be obtained from State Brain Injury Affiliates or rehabilitation centers.
CHOOSING THE RIGHT REHABILITATION PROGRAM
The purpose of this section is to help you make well-informed decisions about the services you or your family member receives. Through general guiding principles and specific questions, it will help you collect and evaluate the information you need to make the right decision.
Contact your Brain Injury Association if you have questions or need additional assistance.
Use the following principles to help you make the best rehabilitation decision for yourself or your family member with TBI.
- Appeal to Your Needs
People with brain injury and their families know themselves and their needs best. Rehabilitation professionals can help provide the information you need to make informed choices, but you have to live with the decisions you make.
- Be Curious
Ask questions. Learn about the program, its staff and rehabilitation philosophy and methodology. If you do not understand something, insist that someone take the time to explain it in the detail you need.
- Learn from Others
When researching available programs, talk with at least three individuals who have participated in each program you are considering. You can benefit from listening to their experiences with the program.
- Explore More than One Program
There are hundreds of rehabilitation programs and services to choose from. The closest one o r the one that offers the most services is not necessarily the on that will best meet your needs. Many managed care organizations established contracts with rehabilitation providers. It can help to ask about other options and about when the plan makes exceptions to use non-contract providers.
- Listen to Your Instincts
Make decisions when you are ready. If you are unsure or uncomfortable, find someone who has no stake in the decision to help you sort things out. Be wary of anyone who tries to pressure you. If you feel pressured, report this to the program’s corporate office, licensing agencies and accrediting organizations.
- Get it in Writing
This cannot be emphasized enough! Keep a log of who you spoke to, the date, time and a summary of your conversation. Keep copies of all correspondence. Get any commitments for services in writing before you choose a program.
- Don’t Go By Looks Alone
The quality of rehabilitation services cannot be judged by how nice the facilities or marketing materials look.
- Take Charge
Rehabilitation programs should promote self-determination to the fullest extent possible and maximize integration in the community. Self-determination can be achieved by taking charge of the decision-making process.
- Know Your Financial Solution
Talk with the insurance carrier, managed care organization other health care payer to find out how much it will pay, for what services and under what conditions. Ask about deductibles and payments. Get a copy of your policy or plan and reread it. Find out the extent of your financial obligations. Get regular (at least monthly) updates about where you stand financially with the payer and program. Find out about public or other private benefits you may be eligible for and apply promptly.
- Be Involved
Distance is no excuse for poor communication. Participate in team meetings. Establish regular verbal and written contacts with key people in the program. Voice your opinions, questions and concerns promptly. You should be welcome to visit, observe or participate at any time.
- Remember: The Customer Is Always Right
As a consumer of brain injury rehabilitation services, you are the customer. While someone else may pay the bills, you are the one who must be satisfied with the services provided. If you are not satisfied, work with the program and funding source to remedy the situation promptly.
In these difficult times, choosing brain injury rehabilitation programs and services may be the single most important decision you make – emotionally and financially. Take the time to make good decisions. Once you are receiving services, stay on top of what is being provided and what other options exist. Be an informed consumer
ASKING THE RIGHT QUESTIONS
The questions below may not apply to all programs in all settings. We encourage you to select those questions that make sense for your particular situation. There may be other questions you feel are important as well, so add them. Write down the responses you get.
Planning for discharge must begin at admission. Have an understanding of what the next step is after discharge, and what kinds of services might be needed and their availability.
Be clear about your intent to be involved in discharge decisions. As with other information, it is important to get discharge planning commitments in writing. It is virtually impossible for anyone to tell you the particular level of recovery that will be achieved. They can, however, commit to what they will do to achieve maximum recovery.
- What are all the possible options after discharge?
- What is the role of the person with brain injury and their family in decisions about discharge?
- Where do you think the person will go after discharge?
- Who decides when the individual is ready for discharge?
- What if a person decides to leave the program with or without advance notice?
- How does the program help research discharge options? Who does this?
- What kinds of follow-up after discharge are provided to the person with brain injury? What kinds of follow-up are offered to the family?
- How long is follow-up offered? What are the charges for this service?
- What is the average length of stay?
- How do I get a complete set of records for my files upon discharge? Is there a charge for this?
- What happens if it appears the person has no discharge options except with family, and the family is unable to provide the care or supervision needed, or for any other reason they feel they are not a viable discharge option?
- What does the program do to locate affordable community housing with a package of supports provided by a variety of state and community agencies?
People with brain injuries have had to leave programs before they are ready because their funding has been used up. Large unexpected bills for rehabilitation services have surprised many people and changed their financial stability and status. The best way to prevent this is to stay informed.
- What is the daily cost of the program?
- What does this include (room and board, medications, physician services, therapy, etc.)?
- What services are billed as extra (telephone, laundry)?
- How are charges calculated (per diem, per unit)?
- What agreement does the program have with my funding source?
- What do I need to do to get copies of all correspondence between the program and my funding source?
- Who is billed for services my funding source will not pay for? What happens if the second source does not pay?
- Am I (or is my insurance) billed for services that are planned or scheduled but not provided?
- What sources of funding does the program accept?
- How do home visits or other leaves of absence affect payment? Is there a bed-hold charge? If so, who is expected to pay if insurance will not?
- What assistance does the program offer to determine which other public or private insurance and financial benefits the individual may be eligible for? How will they help you apply and follow the application process?
- Are the facilities clean?
- Are people clean and dressed in a manner you are comfortable with? Do they appear to be well cared for?
- Does the staff seem attentive, to know people being served by name and to care genuinely about people in the program (i.e., do they stop in the hall to say hello or joke)?
- Is the food appealing? How does the program accommodate special diets, personal preferences and requests for a different meal schedule? Is there any charge for this?
- How many people with brain injuries has the program worked with in the past year?
- How long has the program been in existence? When did it begin to serve people with brain injury? Why was it established?
- Who is responsible for the overall supervision of the services rendered to people served? How often are they at the program? How much direct contact do they have with individual people served?
- Who is responsible for providing medical services? What is their background? Is the same person available at different times, or are multiple medical practitioners used.
- How is my personal physician included in providing medical services while I am in the program?
- How does the program handle medical emergencies?
FRIEND AND FAMILY INVOLVEMENT
The active involvement of family members and friends throughout the rehabilitation process is a key part in achieving success.
- How does your program involve family members and friends?
- What do I need to do to get copies of written reports regularly? Who is responsible for sending me these?
- What kind of family training, support groups and therapy is offered? Is there a charge for participation?
- Since I live far away, what overnight arrangements are made for me to visit for a few days? How about for the person’s friends?
- What is your policy about visitors?