Book Review

COMA, A HEALING JOURNEY: A Guide for Family Friends and Helpers. By Amy Mindell, Ph.D., 292 pp., with illus., ISBN 1-887078-05-3, Lao Tse Press, Portland, Oregon 1999.

Thanks to advances in medical technology, more people with serious illness or injury such as heart attacks, strokes or brain injury are kept living. Some patients who survive these situations remain unconscious or in comatose states, often for longer than ever before. This presents us with new challenges, including ethical decisions about life support, issues of life quality and appropriate care and treatment for people in coma, and the impact of the comatose person’s condition on the family.

As the ongoing discussion about the Oregon law on physician-assisted suicide (Death With Dignity Act) illustrates, the public has become quite concerned about the suffering of people with serious illness and injuries, and by the costs associated with their care. In addition we are witnessing a rising interest in consciousness in science and philosophy. Dennett says, "Human consciousness is just about the last surviving mystery" (Dennett 1991). Within the medical field there are no established criteria for consciousness and there is no device to detect physical signs of consciousness in a patient. Regardless of many unanswered questions about consciousness in comatose states, some of us have to make difficult decisions about life and death and many health care professionals are trying to find new ways to help and treat people in these states.

The clinical diagnosis of persistent vegetative state PVS (long-term coma) is normally seen from a viewpoint of pathology which is based on a mechanical concept of disease. Consciousness or mind is perceived as an accompanying phenomenon of brain activity. Common belief holds, that the more the brain is damaged, the less likely we are to find consciousness or inner experience. While this traditional view is adequate in many purposes it is limited to the perception of an outside observer and tends to devalue these non-responsive experiences. Rightly the Multi-Society Task Force in PVS states that: ".....there is...a biologic limitation to the certainty of this (medical) definition (of consciousness)...". (Multi-Society Task Force on PVS 1994)

In "Coma, A Healing Journey: a guide for family friends and helpers", Amy Mindell, Ph.D. presents the pioneering work that she and her husband Arnold Mindell (Mindell 1984) have done in this challenging area. Mindell shows us that patients who seem to be lost in remote vegetative states in fact emit subtle communicative signals. They offer the perceptive therapist a channel with which to communicate with the patient and we therefore can, with sensitive communication techniques, understand the patient’s experience. She demonstrates how enormously valuable it is to the person in coma for the caretaker to try to connect with the patient’s inner experience instead of trying to be a neutral observer or trying to bring them back to consciousness. Mindell’s main theme and concern is that people in all states of consciousness go through potentially meaningful inner experiences. In contrast to modern medical philosophy, she postulates that the potential for awareness still exists as long as the heart is beating.

Dr. Mindell proposes and admiringly demonstrates that we don’t have to resign ourselves to hopelessness when faced with a person in coma. Instead she invites us to consider all states as rich and, when treated appropriately, to regard them as potential guides to personal growth. Mindell acknowledges that, like any other illness, coma can be excruciatingly painful and difficult and we all hope to spare patients, families and caregivers some of its pain. Simultaneously, she shows us through her broad experience that patients, families and caregivers all benefit from a point of view that values these states as potentially enriching.

As the former assistant medical director of a well-known rehabilitation clinic in Basel, Switzerland, I had, the opportunity to implement the author’s concepts and skills in the therapeutic program for brain-injured patients. I worked individually with people in coma and taught the medical staff and friends and relatives of the patients some of the sensitive communication skills.

Mindell’s approach had an unpredicted beneficial effect on patients, family members, and professional helpers. Family members felt better supported in finding ways to relate to their loved ones. They felt less isolated and had a better chance of staying in a bonding relationship with their relatives through body and movement contact. The staff of nurses, doctors, physical therapists and occupational and speech therapists reported feeling less burned out. They had to fight less against the heavy impairments of the comatose patient’s state and were better able to develop a feeling for the patient’s inner process and to interact with them. Communicating with the patient in a comatose state helps transcend the isolation of both patient and caregiver and enhances relationship, even with initially non-communicative patients.

With our increased awareness of minimal signals and the patients’ feedback we were able to improve our diagnostic abilities, discovering for example more "locked in" conditions (a situation where the patient is completely paralyzed while his cognition still functions) which we would have overseen without these new communication techniques.

For example, Cenan, a 20 year old Albanien citizen, stayed in our clinic for over three years. From a medical point of view he was in a continuous PVS. Only after I sat together with him and his family did I see what I had missed before. When his family surrounded Cenan, he was clearly more awake and attentive. The communication style of the family differed strongly from that of the team of therapists in that it was mostly loud and emotional, while the therapists were more reserved and thoughtful. Only after integrating the new communication style into our therapeutic approach were we able to establish definitive communication and join Cenan in his world. Using the movement of his right arm over which he still had muscular control he could answer yes and no questions, which helped him regain control over some acts of care such as pain management and being moved when he was uncomfortable which he previously had to endure passively.

Cenan’s case shows how complex and difficult the assessment of consciousness is. Our lack of experience and in Cenan’s example, our inability to adapt to culturally diverse communication styles, influences how we behave and relate to people in seemingly non-responsive conditions. The lack of these communication skills could also explain some reports of misdiagnosing PVS (persistent vegetative state) in medical literature (Rosenberg 1977 and Steinbock 1989).

In 1990 the US Congress passed the "Patient Self-Determination Act", which was designed to give patients more control over their destiny by means of advanced directives such as living wills. In "Coma: A Healing Journey", Amy Mindell proposes a "double-state ethic", believing that it is our ethical responsibility to consult not only the person’s prior wishes and the current wishes of family members and medical staff about life-and-death decisions, but also to make every attempt to ask the person in coma. From a normal state of consciousness, highly altered conditions like coma are seen as pathological and offering little quality of life. The author’s experiences show that people in coma often have significant internal experiences. When asked through binary communication if they want to continue living, some respond that, in contradiction to their former statements, they wish to continue living, while others wish to die.

In a recent volume of The Lancet, English scientists reported the successful detection of brain function (visual recognition of familiar faces) in a 26-year-old woman who was in a persistent vegetative state and who was otherwise unable to respond to any external stimuli (Menon 1998). This case suggests that our knowledge of non-ordinary states of consciousness has been quite limited thus far. My own experience with Cenan and other patients, made me question the accepted diagnostic techniques. Based on this new learning I think, that our prognoses for recovery are not yet reliable, in addition to being vague and contradictory.

Dr. Mindell’s book broadens our knowledge of comatose states and helps us develop skills to join the comatose person’s inner experience. Detailed drawings and commentary lead the reader through the steps needed to learn to communicate with a comatose person and to respond to their minimal signals and feedback.

Mindell addresses professional helpers and offers detailed techniques for bodywork, movement, and specific skills for working with brain-injured patients. Relatives and caretakers can learn practical and sensitive methods of communicating directly with those in coma. Mindell’s exercises represent a unique tool for teaching health care professionals how to communicate with persons in comatose states.

Despite of the immense efforts in neuroscience to understand consciousness, there is no consensus within the research field that patients in vegetative states have consciousness. Many bedside medical helpers believe that a person in coma is no longer ‘really’ present, belief most likely born from our frustration and loneliness at our inability to contact the comatose person.

Amy Mindell’s book offers an incomparable guide for taking a first step towards a new understanding of some aspects of coma. It is also a very helpful tool for everybody engaged in the education of health care professionals.

Dr. med. FMH (Swiss Federal Medical Board) Pierre Morin

References:

Dennett, D.E. (1991). Consciousness Explained. Boston: Little, Brown.

Menon, D.K. (1998). Cortical Processing in Persistent Vegetative State. The Lancet, Vol. 352, p. 200.

Mindell, A. (1984). Dreambody. London: Routledge & Kegan.

Mindell, A. (1989). Coma, Key to Awakening. Boston: Shambala.

Multi-Society Task Force on the PVS (1994).Medical Aspects of PVS: Statement of the Multi-Society Task Force. Part I.

Rosenberg, G.A., Johnson, S.F., Brenner, R.P. (1977). Recovery of Cognition after Prolonged Vegetative State. Ann. Neurol.; 2: pp. 167-168.

Steinbock, B. (1989). Recovery from Persistent Vegetative State? The Case of Carrie Coons. Hastings Cent. Rep.; 19: pp. 14-15.

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