By Marie A. DiCowden, Ph.D.
“In traumatic brain injury, the recovery achieved at two years post-injury is the maximum recovery you can expect. You cannot expect any significant recovery beyond that point”. This mantra is repeated daily as an indisputable fact to survivors of traumatic brain injury and their families. It is repeated as conventional wisdom based on the clinical practice of some medical doctors. It is echoed as a financial justification by insurance companies to cut off benefits for continued rehabilitation for patients with traumatic brain injury.
But ask Rusty a 34 year old traumatic brain injury survivor. Rusty was injured in 1995 when he received a blow to the head and was in a coma for five days. Rusty received over two years of holistic rehabilitation with periodic follow up treatment over the next three years. Now, nine years later, Rusty has completed his certification as a heavy equipment operator and owns a small company with his family. He subcontracts and oversees hauling, digging and debris removal at major construction sites for larger, heavy industrial construction companies. He says with pride, “I just got a contract with FEMA for hurricane clean up and am doing very well.”
Current clinical research, evidence based practice data and the National Institutes of Health Consensus Report on Rehabilitation of Traumatic Brain Injury are all shattering the myth that recovery from traumatic brain injury plateaus after 24 months. Physicians and insurance adjustors who adhere to the “24 month maximum recovery rule” are being challenged on this belief.
Challenging the Myth
First, when does the 24 months begin? There is no agreement among the 24 month rule advocates as to when the 24 month clock starts ticking. Does it begin at the time of the accident? Does it begin when a patient comes out of coma? Does it begin when a patient starts rehabilitation? Given the variability in the stages of acute recovery from traumatic brain injury, when the clock starts ticking on the “24 month maximum recovery rule” makes a big difference. Depending on who is counting, an injured and comatose patient, who recovers from a coma and begins rehabilitation 6 mm months after the initial injury, may have 30 to 34 months to achieve the “24 month maximum recovery” plateau. Second, where is the evidence that there are no gains beyond 24 months? Because this myth has led to financial policies as to how much rehabilitation will be funded by insurance companies and, in some states, by Medicare carriers, most physicians and facilities do not treat a traumatic brain injury survivor longer than one to two years. If rehabilitation is no longer provided, the lack of progress of the patient after 24 months becomes a self-fulfilling prophecy that reinforces the old clinical myth.
However, there is a growing body of evidence that clearly refutes this 24 month recovery myth for survivors of traumatic brain injury. Additionally, more advanced clinical practitioners are embracing the concept of life long recovery and developing evidence based care plans for their patients that extend beyond 24 months. Significantly, the legal system is also becoming aware of this evidence and addressing arbitrary limits on benefits set by insurance companies and Medicare carriers for long-term brain injury rehabilitation.
Lisa is a survivor of a traumatic brain that occurred over 16 years ago. Prior to her injury she was a psychotherapist. After her injury she was initially unable to speak or walk and was totally dependent for all her care. After seven years of holistic rehabilitation, Lisa now drives and lives independently with her spouse. She is a peer mentor who assists in running psychotherapy groups for traumatic brain injury survivors three times a week. With her husband, a psychiatrist, she has started a family support group. She also serves as president of the Biscayne Foundation, a nonprofit organization that supports projects for health and rehabilitation of seriously ill and injured adults and children. In 1999, Lisa testified at Medicare hearings on behalf of long-term care for traumatic brain injury survivors. “Long-term rehabilitation made me more than a survivor. It gave me a life after rehabilitation. If I had not had continuous care, I would still be sitting home. At 24 months after recovery, I was not yet reading or writing as I am today. I also still needed attendant care around the clock. Because of long-term follow up, I can now drive and live on my own. I have also been able to take extensive trips to visit family and some fantastic vacations that I would never have been able to make if my rehabilitation had stopped at 24 months.”
Brain Injury and NIH
In October 1998, the National Institutes of Health (NIH) convened a wide ranging panel of experts on brain injury. This panel represented a broad spectrum of disciplines including neurosurgeons, neurologists, neuropsychologists, physical, speech and occupational therapists among others. The final report, issued by the National Institutes of Health convened group, addressed the state-of-the-art information available, and the consensus of state-of-the-art researchers and practitioners, on the injury and rehabilitation process of traumatic brain injury.
The final consensus report is a 304 page publication that covers the most recent neurophysiological findings published at that time regarding recovery of the neurons in the brain. It also presents a consensus of the holistic approach to treatment that maximizes recovery of function and quality of life for patients with TBI and their families. Current literature from numerous laboratory studies refutes the long held axiom that cells in the central nervous system (brain and spinal cord) cannot regenerate.
Brain Plasticity and Holistic Rehabilitation
Plasticity of the brain to develop new pathways of interconnection, to develop parts of the brain to take over functions performed by other areas of the brain that were lost, is no longer merely speculation. Stem cell research and the concept of the plasticity of neurons to adapt and lead to increases in function in conditions formerly believed to be “hopeless,” is now a subject of the nightly news. And, regardless of the political or religious controversies swirling around stem cells, the facts are irrefutable. Science has shown that cells in the central nervous system can regenerate and the brain has a potential for recovery that we are only beginning to discover. Two books in the popular press address this potential as well as the long road from initial brain injury to increased functioning long after 24 months. In Over My Head Claudia Osborn, a physician writes about her experiences and ongoing recovery process from traumatic brain injury. More recently Cathy Crimmins, a writer, published Where is The Mango Princess? This book is an account of her husband’s initial severe brain injury in a boating accident and his eventual road back to re-establishing himself as a functioning attorney long after the “24 month maximum recovery” rule.
The National Institutes of Health Consensus Report also details the need for holistic rehabilitation. In addition to physical, occupational and speech therapy the accepted treatments for individuals with traumatic brain injury include neuropsychological and psychological care. This includes testing and treatment of brain/behavior relationships through cognitive retraining that addresses memory, reasoning, visual spatial skills and problem solving. These skills directly affect a person’s independence and quality of life. Multi-modal stimulation of the brain using music and art therapy, acupuncture and community integration activities are also seen as essential for brain stimulation and recovery from traumatic brain injury.
Since the National Institutes of Health issued its report six years ago, extensive data have evolved regarding the outcomes of cognitive retraining. Early detractors of cognitive retraining, mostly insurance companies who were reluctant to pay for such services in catastrophic cases, said cognitive retraining was “experimental” and “did not generalize” into the “real” world. Hundreds of studies published in widely accepted peer-reviewed journals have now forced detractors of cognitive retraining to acknowledge that it is no longer “experimental,” but is a widely accepted and effective intervention for treating individuals with brain injury. And while traumatic brain injury survivors do better with consistency in environmental stimuli, studies clearly show that cognitive retraining enhances independence, ability to adapt to change and increases the quality of life for patients beyond treatment centers.
Cognitive retraining interventions teach patients to use memory notebooks in their daily life. This increases compliance with medication and medical follow ups that decrease acute care cost. Training in reaction time, impulse control, safety awareness, and problem solving promotes better decision making. The patient’s ability to stay out of risky or highly dangerous situations in everyday life is enhanced. Cognitive retraining in visual scanning, discrimination and planning can also result in increased independence and safety in daily care. This decreases cost in attendant care as well as increases the patient’s self-esteem. The ultimate test of efficacy and cost effectiveness in holistic rehabilitation for patients with brain injury is the patient’s increase in function.
Susan is a 58 year old woman who was injured ten years ago when she was struck by lightning. She was pronounced dead and resuscitated twice on her way to the hospital. Susan received five years of intensive rehabilitation. She had to completely relearn how to walk, talk and develop memory and reasoning skills. Today, Susan continues to attend a traumatic brain injury group therapy for support. However, she lives alone without attendant care. She provides assistance for her 87 year old mother who lives nearby. She is in a thriving relationship with a man that began in the last several years. She also volunteers three times a week at a local rehabilitation center. Susan says, “I had to give up a lot of things since my injury, but my long-term rehabilitation has helped me continue to cope.”
Function As A Measure of Recovery
The nationally accepted standard for measuring functional levels in rehabilitation is the Functional Independence and Assessment Measures (COMBI-FIM/FAM). This measurement tool is applied by clinicians, who are trained in objective application of criteria, to a variety of human functions ranging from basic physiological measures to cognitive and psycho-social skills. Long-term follow-up of traumatic brain injury patients receiving holistic care indicates an increase in measures even six to 10 years after injury. One measure – ability to control bowel and bladder function – which is a strictly neurologically based process long thought resistant to recovery after 24 months, has shown recovery six years after injury.
The World Health Organization (WHO) has embraced function, rather than diagnosis, as the ultimate test in efficacy of treatments and demonstrable recovery of patients. In 2000, they published the International Classification of Functioning (ICF). This classification system is the counterpart of the International Classification of Diseases (1CD) which is now in its 9th revision (ICD-9). Where the ICD provides a systematic way for all disciplines to describe the symptoms of disease/injury and diagnosis, the ICF provides a systematic way to look at an individual’s response to treatment, regardless of the diagnosis. The ICF goes far beyond the Functional Independence and Assessment Measures to look at an individual’s ability to regain capacities in 599 areas. Ten years in development, the ICF can be likened to a “human functionome”. This system provides an excellent basis to begin to implement outcome studies based on positive functions regained rather than merely predicting and dismissing outcome potentials based on a diagnosis of traumatic brain injury and myths such as the “24 month myth recovery” mantra.
Legal Challenges to the 24 Month Recovery Myth
In early 2004, data using the FIM/FAM as well as the ICF were presented in a court challenge of an insurance company’s refusal to pay for long-term rehabilitation of a 43 year old man with severe traumatic brain injury. This patient had made consistent gains in treatment and quality of life since his injury nine years before in 1995. He lives at home with his mother and an attendant, having been released from residential care. He is able to engage in small group activities, read and independently toilet himself. Extensive data of his recovery drove the long-term care plan which was rooted in evidence based practice. Nationally known physicians, neuropsychologists and rehabilitation policy experts testified on behalf of the efficacy and cost-effectiveness of brain injury rehabilitation long past the arbitrary 24 month recovery period. Final decision on the legal outcome of this case is still pending. However, the patient’s treatment outcome is clear. His functions improved dramatically.
In March 2001, there was another clear challenge to the 24 month recovery myth. First Coast, a Florida Medicare carrier, had disallowed payment for 29 patients, a number of whom were seen for long-term cognitive retraining and holistic rehabilitation for traumatic brain injury. The administrative law judge who heard the cases decisively upheld the increase in function and the long-term benefits of cognitive retraining for individuals with brain injury. In one case, a 39 year-old man had a history of traumatic brain injury, violence and drug abuse. He never received rehabilitation for traumatic brain injury after a motorcycle accident 16 years previously. In this case, after three years of holistic rehabilitation for traumatic brain injury, the judge ruled “the evidence demonstrates a disturbed man who greatly benefited from his various treatments” and upheld the provider’s request for payment.
Cost Effective, Efficacious Care
State-of-the-art scientific data and clinical outcome studies support the fact that significant practical recovery of the brain extends far beyond the arbitrary 24 months that has been accepted as the maximum recovery point for survivors of traumatic brain injury. These studies also support the long-term cost effectiveness of providing such care to patients. This is good news for patients and their families. It should also be good news for insurance companies and anyone concerned about the rising cost of healthcare. Monies involved in upfront and ongoing support of function and quality of life for traumatic brain injury survivors can save the cost of lifetime residential care, cost of treating multiple secondary complications and acute re-hospitalizations.
But for the facts to be heard, the myth of the “24 month maximum recovery” window after traumatic brain injury must be challenged. Physicians and other health providers need to be educated. Then armed with the facts, insurance companies that deny coverage for such care need to be educated and challenged legally, if necessary. Judges in the legal system that have heard such challenges are beginning to become aware of the facts and in some cases hold carriers responsible for payment of providing ongoing rehabilitation benefits because they are efficacious and cost-effective in the long-run.
It is important that the mantra, “There is 24 month maximum recovery period after traumatic brain injury,” be challenged with the facts in all areas – medical and rehabilitation, financial and insurance, legal and regulatory. After all, we are each only one accident away from serious injury ourselves. And that could take this issue from an important medical/social concern to one that is vitally personal for us and our own families.
Bell, K.R. Community re-entry of long-term institutionalized brain-injured persons. Brain Injury. 1995 (3) 315-320.
Cope, D.N. The effectiveness of traumatic brain injury rehabilitation: a review. Brain Injury. 1995 (9) 649-670.
Cicerone,K.D. Cognitive rehabilitation: learning from experience and planning ahead. Neurorehabilitation. 1997 (8) 13-19
Crimmins, C. Where is the mango princess? 2001 Random House: New York.
Foxhall, K. Winning one with Medicare. Monitor on Psychology. American Psychological Association, September 2001.
Hall, K.M., Bushnik, T, Lalusic-Kazaic, B., Wright, J, Contagallo, A. Assessing traumatic brain injury outcome measures for long-term follow-up of community based individuals. Archives of Physical Medicine and Rehabilitation. 2001 (3) 367-374.
Kolakowsky-Haynes, S.A., Miner, H.D., Kreutzer, J .8. Long-term life quality and family needs after traumatic brain injury. Journal of Head Trauma Rehabilitation. 2001 (16) 374-385.
Malia, K.B., Raymond, M.J., Bewick, K.D., Bennett, T.L. Information processing deficits and brain injury: preliminary results. Neurorehabilitation. 1998 (11) 239-247.
Mateer, C. A. & Raskin, S. Cognitive Rehabilitation. Rehabilitation of the adult and child with traumatic brain injury. 3rd Edition. 1999 FA. Davis.
National Institutes of Health Consensus Development Conference. Rehabilitation of persons with traumatic brain injury. 1999 US. Department of Health and Human Services, Public Health Service.
Osborn, C. L. Over My Head. 1999 Andrews McMeel Publishing: Kansas City, KS.
Swiercinsky, D.P. Normal Again. 2002 iUniverse: Lincoln, NE
World Health Organization. International Classification of Functioning, Disability and Health. 2001, World Health Organization: Geneva.