Abstract
Consciousness, that most immediate dimension of human experience, remains the most mysterious dimension of our being. Even saying clearly what constitutes the experience of consciousness remains elusive despite enormous philosophical efforts. Demonstrating its presence in anyone but oneself requires a leap of faith. Machines’ ever increasing capacity to behave as if conscious through mechanisms that do not require actual consciousness has led to wide-ranging considerations, from philosophy to science fiction. Attempts to explain the mechanisms of consciousness have baffled the best scientific minds. Following Descartes’ replacement of the soul with the conscious mind, the capacity for consciousness became the essence of being human. This carries enormous moral and ethical implications. Are people to be held responsible for actions taken when they are not conscious or in an altered state of consciousness? In the absence of ordinary consciousness can a person be said to be alive, and to what extent should a body that may have the potential for ordinary consciousness be preserved in the hope that consciousness will return?
Research on the relationship of consciousness to brain states has grown enormously in recent decades, thanks to an ever expanding technology of neuroimaging and other developments. The careful study of brain function in severely brain-damaged people who suffer alternations of consciousness continues a long neurological tradition that is particularly important to integrating brain function study with studies of higher-order psychological processes, including consciousness.
Horrible accidents and cerebrovascular events that catastrophically affect consciousness provide opportunities to understand brain function in consciousness. However, in part because the prognosis in these states in often bleak and the emotional stress of treating these patients so great, it has only been in recent years that careful study of comatose and near-comatose patients has begun to provide richer descriptions of clinical findings and the course of these severely injured people.
One area of substantial progress has been the differentiation of minimally conscious states from vegetative states. Patients in the former, clearly defined and studied only recently, have partial preservation of conscious awareness (Giacino et al. 2002). They are often observed to recover to varying degrees, sometimes after periods of years. By contrast, patients in vegetative states suffer from overwhelming damage to the cerebral hemispheres, while the diencephalon and brain stem have been sufficiently spared to preserve autonomic and motor reflexes and the sleep-wake cycle. These patients may exhibit complex behaviors such as eye movement and withdrawal from noxious stimuli that suggest consciousness, though consciousness is not present and will not return. Differentiating between minimally conscious and vegetative states is extremely difficult in some cases; it remains of great importance, however, because the prognosis and management approach to the two conditions are so different.
In this very well written book Joseph Fins, who holds professorships in medical ethics, medicine, and health policy at Cornell Weill Medical College, takes the reader into the world of consciousness-altering brain injury, with an emphasis on minimally conscious states in which aspects of consciousness and often the potential for significant recovery are preserved. He does this by telling the stories of patients on the edge of consciousness. Far from being ordinary case histories, these narratives tell us about the families and medical professionals involved, about their struggles, fears, despair, and bravery. Though Fins writes with great clarity about the nature of brain injuries and their effects, his scope is far broader than the immediate consequences of brain damage. He explores the meaning of these injuries for all involved, including the very difficult ethical questions that arise in the care of these patients. Through their stories he shows the reader how worlds are transformed for patients, their families, and those who care for them.
As a result of what Fins aptly calls “therapeutic nihilism” and “prognostic pessimism,” many patients in minimally conscious states are maintained in facilities that make no effort at rehabilitation or effective treatment. The patients are usually left isolated and alone. Leaving patients who are conscious, even if minimally conscious, in these isolated states is, in Fins’s opinion, not only immoral but a violation of their civil rights.
The role of families in the care of patients in minimally conscious states is complex. Physicians have long been taught that especially when the comatose person is young, loving family members are likely to search desperately for any sign of consciousness and may easily convince themselves that the patient’s various movements are indications of conscious awareness. The heartbreaking experience of mothers’ clinging to their vegetative children’s slight reflexive movements led to a profound skepticism about families’ claims to have witnessed signs of consciousness. When parents reported that their child looked at a parent’s face in a way that suggested consciousness, many physicians would attribute the report to wishful thinking rather than accurate observation. Yet families, who often spend long periods of time with these patients, do at times witness genuine signs of consciousness that are simply unnoticed by professionals whose brief interactions with these patients do not allow for the sustained observations necessary to catch these events. These observations by watchful family members led Fins and similarly minded doctors to recognize the presence of consciousness in patients who seemed to lack it.
Fins takes us into the heart-rending world of these patients’ families. At one extreme, some families, daunted by the prospect of caring for a terribly ill relative, despite the patient’s significant likelihood of recovering some consciousness and degree of functionality, feel overwhelmed. They tend to push to remove life support and to minimize the physician’s positive prognosis. At the other extreme, some families, faced with extensive medical evidence that the patient is in a vegetative state from which recovery is impossible, cling nonetheless to seeming signs of consciousness and insist on keeping the patient alive, even though the conscious person will never return. Fins’s clear commitment to an ethic of maintaining life when recovery of consciousness is possible leads him to be sympathetic toward families who press for careful evaluations before discontinuing life support and admiring of those who accept “good” prognoses that the patient has a significant likelihood of recovering consciousness, even when that recovery is years away. But he is sufficiently dispassionate and empathic to understand families who press for decisions with which he disagrees. Many psychoanalytic readers will be particularly interested in Fins’s discussions of the psychological worlds of families faced with the horror of prolonged unconscious states from which recovery remains uncertain. His capacity to communicate the psychological world of these families through detailed narratives and extended quotation provides a unique vision of their worlds, unmatched in any writing with which I am familiar.
Consciousness can be present without the capacity to communicate, as is seen in “locked in” syndromes. Patients in minimally conscious states seldom can communicate even those aspects of their thought and experience that are conscious. Fins describes new work in this field and individual cases in which deep brain stimulation has allowed some patients in minimally conscious states to communicate to some extent. He explores other technologies that hold promise for such communication. Especially when it comes to patients’ rights to determine the level of care they will receive, the availability of communication through these new technologies is likely to be associated with complex ethical problems, which Fins anticipates. Communication is but one of many areas involving disorders of consciousness that call out for research. As with many aspects of the care of these patients, this research is costly, both financially and in terms of human resources. Fins is loath to consider that financial limitations should play a role in determining research or care, but his strong position fails to address the tragic reality that whatever is right in this regard someone will make decisions on how limited research and health care dollars will be spent.
Fins is a strong advocate for the rights of patients who until recently were thought to be beyond hope and who, in consequence, often receive care that is far less than adequate. He advocates for parents who do not give up in the face of physicians who see their children as hopeless and ignore evidence to the contrary. The psychoanalytic reader may wish that he had more thoroughly explored the motivations of these parents and is left wondering why some families are so much more able to advocate for their children than others. Fins’s portrayal of these courageous people, like similar description of brave people in other contexts, calls out for better explanation of the dynamics of heroism. But even more powerfully, Fins confronts the clinical reader with the question of the ease with which terms like “denial” are applied to parents who push for the best possible care for their children, despite how grim the situation may appear. More sinister motives for perceiving a poor prognosis can be attributed to insurance companies, who commonly limit coverage for rehabilitation in order to lower their financial outlay and increase profits. Since many patients in minimally conscious states recover very slowly over a period of years and require extensive rehabilitative services, showing that recovery is possible is a major goal of this volume.
The psychoanalytic reader will come away from this book with renewed curiosity about the nature of consciousness, in both its psychological and its biological dimensions. I for one am likely to be more attentive in sessions, and to wonder more, about how the complex phenomenon we call consciousness shapes analysands’ lives as they emerge in the analytic situation. The reader is also introduced here to a world of courage, suffering, and thoughtfulness. Fins does a spectacular job of bringing the reader into the lived world of his patients, their families, and the people who care for them. Offering fine-grained and sophisticated descriptions of the particulars of the lives of these patients, families, and treaters, he takes us into a world that is all but invisible to all but those directly affected. His rich description of the subjectivity of people in extreme circumstances is fundamental to our psychological and practical understanding of these lives.