Bioethical issues in Traumatic Brain Injury
GOING THE DISTANCE: JOURNEYS OF RECOVERY is a documentary film about the lives of survivors of Traumatic Brain Injury. Directed by multi-Emmy Award winning filmmaker David L. Brown, the project is seeking funding for its finishing phase. This film has had multiple previews in collaboration with brain injury advocates. It has also been used in therapeutic TBI groups to gauge the communities' take on their depiction. An earlier film by the same director, SURFING FOR LIFE, reinforces that Brown, like any good film auteur, finds different ways of telling stories whose elements are significant to him.
SURFING FOR LIFE deals with optimizing life from childhood through aging. It explores our relationship with water or what evolutionary biologists J. W. Nichols calls the ‘Blue Mind.’ GOING THE DISTANCE also deals with maximizing people's potential, after the have acquired brain injury. Not surprisingly, some of the films protagonists also have a restorative relationship with water.
David L. Brown’s films have a solid optimism to them. That’s right, GOING THE DISTANCE is an optimistic film about TBI. The project follows four people through a narrative spanning roughly eight years. The work has the weight of longevity, diversity and the drama of living on the edges between life, death and rebirth. With four main characters, instead of one, the film is racial, gender, and age cohort inclusive. Permutations and combinations leave every viewer identifying with some part of the story.
Why is Traumatic Brain Injury of particular bioethical concern? There are tensions between beneficence, autonomy and justice manifest in issues around the epidemic incidence of TBI. The principle of beneficence, doing good with our science, services medical indications. We now have plenty of neuroscience to support how these injuries occur at the cellular level and the best ways to prevent and deal with the sequelae. Yet, there are organizational and geopolitical barriers to clinicians and survivors accessing, or utilizing that information. Justice is facilitated by equipoise. Equipoise is the equitable distribution of burdens and benefits. Organizational and geopolitical factors often impede equipoise in the prevention and management of TBI.
Among the important new science is a better understanding of ‘neuroplasticity,’ Dr. Albert Ray considers neuroplasticity the operating system for the nervous system. It is the mechanism whereby the physical anatomy and physiological workings of our nervous system happen, both in normal and pathological conditions. It is what makes the brain programmable and re-programmable.
After a period of intense neurological rest, recruitment and retraining of undamaged brain tissue improves functional capacity. That recruitment process results from neuroplasticity, or reshaping parts of the brain, to assume tasks abandoned in the aftermath of the traumatic injury. Neuroplasticity fuels the work of occupational, physical and speech therapist and those acting in their stead. When forced to prognosticate, professionals do so within the parameters of the resource stressed systems in which they work. For instance they might cautiously say," A person with this initial assessment, receiving therapy weekly, can expect 'X' amount of functionality in one a year." GOING THE DISTANCE is a story about best chances to exceed those expectations.
Other manifestations of conflicts between beneficence and justice affect veterans returning from war zones with undiagnosed TBI as well as Post Traumatic Stress Disorder, car accidents, repetitive concussions from sports, violent assaults and motor vehicle accidents. All of these disproportionately affect the young, very old, poor, and people of color. Adequate activities of known therapeutic benefit and prevention are often unattainable because of cost and lack of trained resources. Though brilliant acute trauma and neurosurgical care occurs in most urban centers in the USA, the follow up care is lacking. TBI, is a health and healthcare disparity issue.
Traumatic Brain Injury also results in bioethical tensions between beneficence and the principal of autonomy, or the right to do what is in one’s own enlightened self-interest. Most agree parents are appropriate surrogate decision makers for their children. Substituted judgment in adults, particularly young adults, with brain injury is wrought with uncertainty regarding extent of damage to a person’s decisional capacity. In this way TBI, like dementia, is a moving target. Dementia and TBI are related in other ways as well.
There is compelling data that negative cognitive effects are among the most disabling of post-concussion symptoms following moderate and severe TBI. These effects unfold slowly, sometimes over years and lead to high incidences of dementia. Deficits occur in attention, memory and "executive function," These deficits show up as impulsiveness, mental fatigue, frustration, depression, pain, self-medication, substance abuse and loss of employment. Justice suggest,” those with the most burden should have the most benefit.” In the most developed nations, minds which operate “like steel traps,” are adored. TBI survivors rarely have those kinds of minds and are often not well accommodated by legislative measures, including the application of the American Disability Act.
The film CRASH REEL gives a good example of autonomy conflicting with beneficence. An extraordinary athlete, champion snow boarder, struggles with his late stage cognitive and physical limits. The recently completed film, STATES OF GRACE (reviewed elsewhere on this blog) like CRASH REEL, is about another person with uncommon capacity facing extraordinary adversity. There is much to learn from these films but it is not the story of GTD.
GOING THE DISTANCE is about ordinary people riding waves of adversity, while attempting the boring things of daily life. They use “what they’ve got." What they have is family, friends and advocates. By example, GTD gently makes the point that those without support have rougher rides and may drown in the surf. GOING THE DISTANCE is a documentary about quiet heroes focused not on what they cannot do in TBI recovery, but what they can.
GONG THE DISTANCE (Digital) directed by David L. Brown ( 2014) pending release USA. 62 mins http://www.goingthedistance.
SURFING FOR LIFE (Video) directed by David L. Brown (1999) USA 68 min. http://www.surfingforlife.com/
THE CRASH REEL (2013) directed by Lucy Walker http://thecrashreel.com/ HBO Films USA 108 mins
STATES OF GRACE ( 2014) directed by Helen Cohen and Mark Lipman (USA) distribution pending 71 mins.
Nichols, W. J. Blue Mind. Little, Brown and Company, 2014.
Ray, A. Neuroplasticity, Sensitization, and Pain. in Comprehensive Treatment of Chronic Pain by Medical, Interventional and Behavioral Approaches. ed. Deer, T.R.;Leong,M.S; Ray, A.L. et. al. ; American Acad- emy of Pain Medicine. Springer Inc. 2013.p 759-768,
Shively S1, Scher AI, Perl DP, Diaz-Arrastia R. Arch Neurol. Dementia resulting from traumatic brain injury: what is the pathology? 2012 Oct;69(10):1245-51http://www.ncbi.nlm.nih.gov/
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