Traumatic Brain Injury and the Goals of Care

In this issue of the Report, Bruce Jennings gives us a beautiful and carefully articulated discussion of the care that should be accorded to brain-injured persons. He critiques conventional methods of providing care and suggests three areas for bioethical reflection: (1) the relationship of mind and body, (2) quality of life issues, and (3) the proper stance of family members vis-à-vis a person with moderate to severe brain injury.

For each area, Jennings presents wonderful goals for a successful recovery but does little to develop the means to attain these goals. An exceedingly important oversight in his reflection is the critical issue of resources. Those who are affected by an experience with brain injury may agree completely with Jennings's suggestions but still feel overwhelmed by the chasm between the goals he describes and the level of resources necessary to achieve them.

For example, Jennings stresses that the mind is not reducible to the physical structures of the brain but is constitutive of the human subject or person. The mind is, therefore, not only physically constructed but socially constructed as well. This may be true, but the reality is that most individuals who have suffered a traumatic brain injury begin their journey to recovery in a medical institution. The focus is on their physical deficits, and it is only when they are sufficiently medically stable that they are transferred to rehabilitation centers. Here, too, the person in charge is usually a physiatrist (a doctor of physical medicine) or a neurologist. So the medical pattern continues.

In addition, the medical system is fractured. Patients move from one institution to another, which makes it even more difficult for medical personnel to help heal a fractured identity. Brain-injured individuals are not integrated into a community where the social construction that Jennings calls for can take place; they are isolated in medical establishments.

Jennings's second point focuses on bringing those who have suffered from traumatic brain injury back to semantic agency, where they are again setting their own goals and are assisted in reaching those goals. This, too, is a worthy and noble and correct end. However, with the structures that are currently in place, this goal is almost impossible to attain. Admission to rehabilitation is highly selective and depends a great deal on one's ability to pay. Rehabilitation institutions can control outcomes by limiting those they admit. They accept only those individuals who have the greatest chance to benefit and whose insurance covers their services. Likewise, persons in rehabilitation facilities must continually make documented progress, or they are discharged. Yet the reality for most individuals who suffer a moderate or severe brain injury is that progress toward recovery is slow, and recovering agency takes a lot of time, energy, and support—more than is usually available.

Jennings's third point focuses on the caregivers. He encourages a model of trusteeship rather than guardianship. This means that caregivers should view those who are injured as having a different capacity, not less capacity, and should do more than provide for their comfort and safety. Again, a noble objective. In some cases, however, the affected families were already marginalized before the injury, are further marginalized in trying to care for a brain-injured family member, and would be doing well if providing comfort and safety were all that they managed. In some cases, too, it was the high-risk behavior of the individual that caused the brain injury, which can make it challenging for the family to return decision-making power to that person. Likewise, Jennings makes little mention of how difficult it can be to deal with the disruptive behavior and many physical, emotional, and cognitive issues of those who are brain injured. For caregivers to do a decent job, they need respite care and many social supports; in actuality, our social system ignores them. Everything about the system, as it currently exists, promotes the abandonment of the brain-injured person rather than the development of the life-giving relationships that Jennings calls for.

Jennings presents a wonderful paradigm of how we as a society should deal with those...