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Brain injury: society's new dilemma.

While medical technology can keep victims of severe head trauma alive, the costs for their families--both financial and emotional--are overwhelming.

TWO DECADES AGO, the U.S. had no problem dealing with survivors of severe head injury--there simply weren't many. Hundreds of thousands of people suffered serious brain trauma each year, but the crisis tended to be short-lived. The great majority died during the first few hours, days, or weeks after the motor vehicle accident, fall, or assault.

In the 1970s, however, the Federal government developed and funded important national programs to attack the "hidden epidemic" of trauma. A Department of Emergency Medical Services was established in what is now the Department of Health and Human Services and led the effort to increase access to high-quality emergency treatment. Emergency 911 lines were set up. Ambulance and helivac services were expanded and staffed by trained technicians with the knowledge and equipment to bring emergency room techniques to the street. Emergency departments in hospitals were upgraded and a national network of trauma centers established. At the same time, technological advances such as CT scans and microsurgery made possible rapid diagnosis and sophisticated treatment for the patient with neurological injury.

Because of this multi-billion-dollar program, the number of people who survived severe trauma and brain injury increased enormously. However, they often survived with disabilities, leaving the nation's health care system with yet another challenge--an entire new patient population in need of long-term treatment and rehabilitation from their injuries.

Of the 500,000 people who are hospitalized in this country each year because of head injury, 70-90,000 survive the initial trauma with debilitating loss of function. Swallowing and feeding disorders can make adequate nutrition difficult. Partial or complete paralysis is common, and some individuals need ventilator care to breathe. Bedridden survivors are at risk for decubitus ulcers, as well as pulmonary and urinary infections. In addition to these physical complications, others suffer extremely difficult behavioral and psychological problems, including loss of memory, poor ability to control temper, erratic judgment, sexual dysfunction, and cognitive deficits.

The government programs of the 1970s were a great success in saving people's lives. Unfortunately for many survivors, no comparable national programs have been developed to provide medical and societal support after the initial medical crisis. Not only is acute care in the hospital setting extremely expensive, but, in scores of thousands of cases, head injury survivors need major care beyond hospitalization. A single survivor of severe head injury may require five to 10 years of intensive treatment with an estimated lifetime cost of more than $4,000,000.

In the last decade, a variety of facilities have sprung up to deal with the multiple physical, psychological, and social needs of this new patient population. They include nursing homes, specialized rehabilitation wings of hospitals, and free-standing rehab centers. In the absence of any major government program to support such institutions, funding for the high-tech, personnel-intensive, and sometimes long-term treatment they provide remains seriously inadequate.

During the long and costly process of post-trauma treatment and rehabilitation the family of the brain injury patient will find their lives turned upside down. In an instant, a family member has been changed dramatically and often permanently--not just physically, but mentally and emotionally as well. One of the most frequent comments family members make in this situation is that the patient is "not the same person" as before the accident. The family must undergo a process that often has been compared to the adjustment following the death of a loved one--through various stages of shock, numbness, denial, grief, and anger--to some kind of acceptance of the survivor's new status.

Studies show that a family's process of grieving after a head injury--a process that receives much less societal support than grieving after a death--takes a more circuitous course. Different than with death, frustration and difficulty in coping are likely to increase, rather than diminish, over time.

Families of brain-injured survivors go through many painful experiences. They see their hopes for the future shattered and have enormous caregiving and financial demands placed upon them. Parents often feel guilty, blaming themselves because their child is not getting better. Siblings may suffer both from the psychological trauma of seeing a brother or sister permanently disabled and from the parents' concentration on his or her plight. Spouses, especially, suffer with physical, financial, sexual, and psychological stress. Many-90% in one survey--feel trapped in a situation in which it seems that virtually their entire lives must be spent keeping a seriously injured spouse going, sometimes with little psychological reward for their efforts. Little wonder so many such families become dysfunctional. The divorce rate under such circumstances (and the guilt attendant upon "bailing out") also is high.

At any of the stages of grieving and adjustment, family members understandably will need to release their anger and frustration at the turn of fate that has left their loved one seriously, perhaps permanently, disabled. Some turn their anger inward, blaming themselves for their plight. Others may blame "life" generally. It often is easier for families to turn their rage on the professional caregivers--the people whom they most associate with their loved one's new, damaged status, and who are most accessible to be blamed. These professionals have to learn to deal with misplaced anger and help families through the crises they face.

Coming to grips with the patient's new situation, like the process of treatment and rehabilitation, may take years. Eventually, every family member must come to some kind of acceptance of the loved one's capabilities, however limited. They must learn to let go of the individual they once knew and devise some way to incorporate the new person into the family system.

Once the patient has survived the initial trauma, undergone acute treatment and then rehabilitation, a still more difficult and confounding situation exists--learning to get along in a society unaccustomed to dealing with disabled individuals. Too often, people tend to relate physical with mental health. If the patient is seriously disabled physically, perhaps wheelchair-bound or impaired in speech, friends and acquaintances sometimes assume--erroneously, of course--that he or she is mentally slow or deficient as well. This assumption can damage the survivor's self-esteem and prevent normal relationships from developing. In other cases, the patient may look normal, but have serious cognitive deficits people don't understand or accept.

Sympathy is another widespread attitude that works against the brain injury survivor's self-reliance and self-help. However necessary it may be, sympathy by itself will not enable the patient to adjust to a new role in the world--it needs to be coupled with practical kinds of support, such as providing assistance in daily activities.

The particular complications of head injury often prevent reintegration into society. Extremity contractures and other disfiguring problems are serious barriers to acceptance. Bowel and bladder incontinence is socially unacceptable. Poor mobility is a major handicap in a fast-moving, largely urban society. The inability to think clearly or quickly, or difficulty in controlling one's temper, unfairly can render the patient an outcast in our culture.

A large part of the work of any rehabilitation center is to prepare the patient and family to face the difficulties of their limitations in the real world. To develop strategies for coping, the survivor needs help in understanding what resources are available in the community and the rights of the disabled individual. Groups like the National Head Injury Foundation can help on both of these counts.

Society needs to help make life as rich and fulfilling as it can be for the now many survivors of trauma. The success of the programs of the 1970s will remain incomplete unless and until these individuals successfully are rehabilitated and reintegrated into society. Specifically: * The medical specialties that study and treat the long-term problems faced by brain-injured individuals must be supported. * It is necessary to develop creative living situations. Most important are programs aimed at re-entry into home communities, helping survivors overcome or adjust to their deficits through acquiring various cognitive, vocational, and living skills. For those who do not return to reside with their families, programs in independent living are needed to enable them to maintain close to normal lives in normal residential situations. They may require special support services to aid in dressing, cooking, shopping, and similar activities, and certainly need counselors who can help them gain access to necessary therapies. * Substantial Federal and state financing for rehabilitation and long-term care, and the education of insurance providers of the value of this care, must be demanded. * Above all, the public has to be taught to accept fully the neurologically disabled. Just as the family must develop a new "culture" to deal with the individual survivor, society must develop a new community culture to accept and support this large and growing group of survivors.

If the money, talent, and resolve necessary, to solve this new brain injury dilemma can not be found, the great gains in trauma care of the 1970s will turn out to have been a somewhat empty triumph. We will be denying full participation and full humanity to hundreds of thousands of people whom we have fought to keep alive.

Dr. Wasco is Director of Medical Affairs, New Medico Head Injury System, a national network of rehabilitation facilities based in Lynn, Mass.
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Author:Wasco, James E.
Publication:USA Today (Magazine)
Date:May 1, 1993
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