By now the scene is familiar and the story predictable. An expectant family is in my office at Weill Cornell Medical College sharing the story about how a son or daughter, husband or wife, mother or father sustained a brain injury. They have come to Cornell to participate in scientific studies designed to understand how the brain recovers from disorders of consciousness, serious conditions like the vegetative and minimally conscious states. Their goals are modest. They want to know if their loved one is aware and if they will get better, be able to understand, speak, and love again.
When they arrive, most are worn out. They are like refugees, having been cast aside by an indifferent health care system that provided brilliant emergent care only to abandon them thereafter. Irrespective of differences in race, ethnicity, class, or state of origin, a stereotypic pattern of neglect emerges.
Although each case is unique, the overall story becomes rather predictable. Families face a pervasive nihilism with practitioners assuming a static notion of brain injury. Despite stunning scientific evidence to the contrary, the prevailing view in the clinic is that all brain injuries are immutable. From this perspective, it is preordained that the injured brain cannot recover and that the humane course is to pursue palliative care, to let nature take its course.
At the bedside, this translates into early – some might say premature – decisions to withhold or withdraw life-sustaining therapies, writing do-not-resuscitate orders or removing of ventilators, even before patients have had a chance to declare themselves. More worrisome have been reports of families urged to turn their loved ones into organ donors before their prognosis is clear.
Most families do choose a palliative course, knowing that even under the most optimistic of scenarios their loved ones will need ongoing medical care and years of rehabilitation. Theirs is a reasonable choice, and perhaps a logical one, appreciating the considerable challenges, when early optimism and the promise of recovery do not get translated into desired outcomes. For these families, death is preferable to survival and what some would describe as an even worse outcome, a diminished or extinguished ability to interact with others.